Could it be?
 

Hi,
I'm wondering if anyone can tell me if after a week off of Cymbalta I can still have withdraw symptoms.

My symptoms have changed no tears but I am completely miserable. Literally yelling at my husband and my son. Just so you know this is not like me at all.

After I do it I feel terrible. How many times can I say I'm sorry when I continue the behavior. I feel like a brut!

Please let me know if you have any information concerning this.
I'm praying it gies away soon but I'm wondering how long that will take!:(

Time for the tryptophan to enter your life.

The long term use of SSRI type drugs leads to low serotonin levels. It takes a long time for the cells to wake up and make
more. The tryptophan will help stimulate new synthesis and
then you may be less agitated.

Also the Wellbutrin may be a factor. A dosage adjustment may help.

Dealing with these sophisticated drugs that alter neurotransmitters is really dicey...hit and miss. This is because people all vary in ratios of these chemicals naturally, so taking a drug upsets quite a bit.

:ROTFLMAO: YES! YES!! A THOUSAND TIMES, YES!!!
(and magnesium :wink:)

(From the husband of a post-Celexa/citalopram shrew—she's feeling MUCH better now... :D)

Hopeful, we talked about this before. Everyone is different, so it could take some time (according to what I've read—depending on how long you've been on it). BUT IT TOO SHALL PASS! :D

Doc

Thanks for the input!
Mrs D. I did speak to the doctor today and he increased the Wellbutrin to 300mg. Hopefully, that helps. I am also going on line today to find a place to order the tryptophan. I know you and doc mentioned a dosage before so I'll search for it.

Dr. Smith, I'm betting right about now my husband thinks I'm a shrew too!! Can't say I blame him!

I think my brain is no longer producing serotonin from being on the Cymbalta and it is going to take a while for it to start producing it again.

What a mess! Eli-Lilly deserves to have the pants sued off of them!

Thanks again! It's at least comforting to know it's not just me and this too shall pass.

Doctor's Best and NOW are good brands.

Start at 500mg a day and work up to 1 gram. That is possibly all you will need. Take tryptophan alone, away from any protein foods. The other aminos compete with it at the blood brain barrier, and you want it to cross in good amounts.

If you take the first dose on an empty stomach in the morning wait at least 1 hr before eating any protein.

I found tryptophan can help with sleep too.

300mg of Wellbutrin may be too much for you.. keep that in mind.

Mrs D.
I just want to be sure of taking Wellbutrin with the tryptophan. I have been doing research that states it is not good to take with antidepressants. Although, there is info on many of the most popular antidepressants there is little on Wellbutrin. I just want to be sure.

Also, may I ask why you think 300 of Wellbutrin may be to much for me? I just want to know what I should be aware of.

As always thanks for your advice!

It's a good question to ask. The theory (now in question) is that depression was linked to low levels of serotonin in the brain. The antidepressants of concern—SSRIs and SNRIs—work by preventing reuptake (reabsorption) of serotonin, artificially keeping levels higher than they would be without intervention. This works for some people (but now they're finding it's more complicated than just that).

Wellbutrin (bupropion) doesn't work that way; it's considered an "atypical" antidepressant. It works on norepinephrine and dopamine instead of serotonin, preventing reabsorption of those chemicals. SNRIs work on norepinephrine too, but it's the serotonin that's thought to be the problem.

emphasis mine

FWIW, DW found the best deal (when she ordered it) was Source Naturals. She started on 500mg x 2/day, which worked the first day then stopped. After a few days, we upped it to 1000mg x 2/day, which is working for her. I'm not concerned if it had to go to 1500mg x 2/day, but higher than that I'd do some more reading (several sources said up to 4000mg/day was safe). We tend to be somewhat conservative and titrate slowly, so we use the minimum needed.

Depending on your various medical issues, other meds, etc., you may need a different dosage, but I'd still start low, listen to your body, increase slowly if need be, and keep your doctor in the loop. :wink:

Doc

I have been studying these drugs for over a decade.

There are studies and clinical observations published that using a drug that alters a neurotransmitter in the brain, causes the brain to try to adjust things somehow (this is not well understood), and that affects others.

Here are some examples:
1) Some opiates (including tramadol), will affect serotonin levels (expression) as well as sitting on mu pain receptors.
Oxycodone is one synthetic that does this alot but others do too.
The "itching" they cause as a side effect is thought to be a serotonin release and not histamine effects.

2) Some neurotransmitters are stimulated by histamine in the brain. This cascade begins with histamine which acts like a trigger.
http://www.ncbi.nlm.nih.gov/pubmed/21713693

3) Long term use of SSRIs is thought to alter dopamine levels in the brain as a consequence. The reverse may also be true... using a dopamine based antidepressant like Wellbutrin, may reduce serotonin over time. (or affect its expression).
People on long term SSRI therapy may develop a syndrome similar to Parkinson's....or tardive ..where the legs twitch and facial, tongue and neck muscles twitch involuntarily. Not everyone gets this but about 10-15% or so do.

4) Here is a link...complex but maybe helpful for you from Dr. Kraslow:
http://www.drkaslow.com/html/neurotr...repletion.html

There are sites on the web explaining Wellbutrin/Zyban irritability side effects:
Just Google "Wellbutrin agitation", and you will find many discussions.

So it might be that RAISING your Wellbutrin is not the answer for you. Be very vigilant about side effects of this. Many doctors just automatically raise doses when patients complain... and for many this is not really a solution.

We really don't know if dopamine is a triggering neurotransmitter for some serotonergic responses. However reputable medical sites like WebMD where interactions are listed do not give Wellbutrin as a problem with tryptophan:
http://www.webmd.com/vitamins-supple...t_interactions

One solution for you long term may be SAMe. This supplement naturally offers stimulation and support to all neurotransmitters, and also liver metabolism support and joint/ligament repair.
It is slow onset, but very helpful to some people.

So the bottom line is: You may become more tetchy on higher doses of Wellbutrin. As the doses are raised you may have cardiac palpitations, which can be alarming...so watch for that.
Your new blood pressure medication might suppress this side effect for a while, so it might take time to manifest, if it is going to.

If tryptophan is too slow for you to give the results you want, you may try 5-HTP... 50 or 100mg at bedtime. Some people like this...it is made from tryptophan, and is really a pro-drug...a supplement with drug-like speed of onset. It is over the counter.
I personally didn't like it when I tried it during my menopause for sleeping problems...my solution was B12. But people do vary, and I've met them, mostly women who like 5-HTP.

MrsD is samE safe to use with gabapentin? Iam having joint pain and wanted to start using it again. Sorry to interrupt. thank you

Should be okay. Start slowly... 200mg a day on an empty stomach for at least 2 weeks. Move up to 400mg a day same way all at once.

SAMe can increase anxiety or cause insomnia in some people as they get used to it. It doesn't do this for me...but does for my son (but he is much younger). For this reason don't take it at night.

I have taken it in the past with no problems, 400 a day at some point but quit, wasnt sure it did anything,though it may have helped my knee pain, but I have started to get joint pain since starting gaba and thought I would try it again. thanks MrsD!

Hopeful, wanted to say hi and hope you are doing better! Thinking of you and keeping you in my prayers!

As a reminder... SAMe is not for people already taking some type of antidepressant. It is for "instead of" use only.

Do you mean me? I didnt think gaba was an antidepressant, but an anti seizure drug? Sorry if you are not talking to me.

Gabapentin is a drug, which affects nerve signaling. It is not an antidepressant.

It is not GABA which is something different. GABA is a neurotransmitter for the inhibitory neurons.

This thread is for Hopeful, who is having problems with drugs that affect neurotransmitters. I just forgot to add that last statement to my last post, that is all. It may pertain to some people here but not all.

Im sorry hopeful, I did not mean to hijack your post. Hope you are feeling better! :hug:

L-tryptophan or 5-HTP?
 

....That is the question!

There's no shortage of opinions on this, and some are—quite aptly—dependent on what they're being taken for—antidepressant discontinuation syndrome, anxiety, chronic pain, depression, fibromyalgia, insomnia/sleep, other...

I dug into it briefly (albeit intensely) when my DW/caregiver/soulmate recently tapered off Celexa/citalopram (SSRI).

It was like....

Quote:

MRS. DR. SMlTH: CAREGlVER, RETlREE.__SEARCHlNG FOR A WAY TO TAP lNTO THE HlDDEN STRENGTHS THAT ALL HUMANS HAVE.__THEN AN lNTENTlONAL REDUCTION lN DOSE OF ClTALOPRAM ALTERED HER BODY CHEMlSTRY.__AND NOW WHEN MRS. DOC GROWS ANNOYED WlTH DOC OR OL' FURFACE, A STARTLlNG METAMORPHOSlS OCCURS!__THE CREATURE lS DRlVEN BY RAGE AND PURSUED BY AN lNQUlSlTlVE RETRlEVER/SLOBBERMONSTER. [MRS. DOC:] "FURFACE, DON'T PEEVE ME OFF.__YOU WON'T LlCK ME WHEN I'M PEEVED OFF!" __THE CREATURE lSN'T WANTED—YET—FOR A MURDER SHE JUST MlGHT COMMlT.__THE OLD (RAY OF SUNSHlNE) MRS. DOC lS FEARED TO BE DEAD, AND THE WORLD MAY THlNK THAT SHE lS DEAD, UNTlL SHE CAN FlND A WAY TO CONTROL THE RAGlNG SPlRlT THAT DWELLS WlTHlN HER! http://1.bp.blogspot.com/_KiZAO11S73.../20101113a.jpg

Articles/studies going back 20+ years made convincing arguments both ways; both have their pros & cons. To me it seemed that L-tryptophan has a better safety profile, but I think anyone considering these supplements should read the available literature and decide for themselves—maybe make one of them "Plan A" and the other "Plan B".

So far, despite one uptick in dosage, the tryptophan is working great! :D

Doc :D

Hello all,
Mrs D and Dr Smith really do appreciate all the information. I haven't had a chance to read it all yet but I wanted to say thanks. I haven't started the tryptophan yet because I haven't been on the site to see all of your answers.

I probably will not be able to get it until the end of the week since I'm down my daughters trying to potty train my granddaughter. Not going so well but just started today. Ii is fun being with her.

I got a call from my doctor today. I think something is going on with me. First high b/p now high cholesterol. My total is 246. My LDL is 178. My HDL has come up from 39 to 46 so that is good. In case your wondering I was fasting.

I just don't understand all of this. I am a healthy eater. I do have dark chocolate everyday but not a lot. I eat oatmeal everyday. As my husband said I can't change my diet much more.

I'm starting to think there is something wrong with me that caused the SNF, all the pain, my changes is b/p and cholesterol. I have had runs of a-fib over the last year. I wore a monitor and the cardiologist said he saw it but it's not enough to worry about. Also had a medical stress test. They wouldn't let me do the treadmill because of my neuropathy.

I do feel my heart pounding at times. This was well before the Wellbutrin. This is crazy and personal but sometimes when I think it is my heart I end up with my stomach feeling like it is full of gas.

I know one thing, I'm not just going to keep going on different drugs for each new problem.
That appears to be their answers to everything!

Stacey no problem you did not hijack anything. We all have questions we need to ask. I hope you are doing well also!

We'll if anyone can think of a connection with all of this please let me know.
As always thanks to all!

Ps Dr Smith I love the cartoon and have to say it looks familiar although the last few days on the increased dosage of Wellbutrin I'm not so crazy.

Pretty much. This is the way most western doctors are trained; treatment for injury/disease is most often either surgery or medications.
emphasis mine

Some doctors are branching out/expanding away from that—holistic medicine, osteopathy, integrative medicine, et al. I don't have a problem with these alternative approaches if/when they have a solid basis/foothold in science, but IME some can stray a bit far into the fringe (i.e. pseudoscience). I hear/see the term "cutting edge" bantered about but IME that phrase is also used as a smokescreen; sometimes the borders/delineation between medicine & quackery can be blurred/vague. In many/most cases (with some notable exceptions), only time will tell if they pan out or not.

It was an attempt to parody the opening narration to The Incredible Hulk (1978 TV series).

It seemed like a funny idea at the time... :o

Doc

You were right it is funny! It made me laugh out loud. I showed it to my daughter and son in law yesterday. They got a kick out of it!

I'm sorry but I have yet another question. My lab work shows a trace amount of ketones in my urine. I know that can be nothing(at least I think so).

I was thinking though that I have high blood pressure, high cholesterol and now trace ketones. This is all new.

There was no glucose in my urine. My metabolic panel showed a glucose level of 87.

I ask I'm asking is should I request any more testing?

Ketones will show up if you are eating high protein, low carb food.

In fact the Atkins' diet used ketostrips to check on how well people were avoiding carbs.

This link also shows other causes:
http://www.nlm.nih.gov/medlineplus/e...cle/003585.htm

Since your result was low, I'd not worry about it yet.

MrsD & Hopeful,

I know I have brought up the steroids (with the IVIG) before in relation to the osteoporosis, but can't the steroids cause ALL these NEW issues...osteoporosis, high BP (from fluid retention), high cholesterol, and even the Ketones?

Isn't it more likely that ONE things is causing all the NEW problems vs 4 NEW things causing the 4 different problems?...I mean what are the odds here. If you have coincidentally acquired 4 new problems all recently from 4 different means, then I think you should go play the lottery...LOL

Thanks Mrs. D. I also got my vitamin D levels back they are total 40, D3 40, D2 <4.

I currently take D3 2000. Is that all I need?
Thanks :)

That is pretty good for D3. It is your decision if you want to go higher. You could do 4000 IU one day and 2000 IU the next for a while and see if you raise at all next testing.

Watch your calcium intake, and keep any supplements below 600mg a day.

Hi enbloc,
I agree with you. When the nurse called yesterday she said he will probably put you on a cholesterol med. I said I don't want to do that until we figure out what is causing all this. She told me I could wait until I see him next month.

I agree there is one thing causing all this. I only get 20mg of solumedrol with my IVIG.

Maybe one of you could answer this for me. I have been researching how long 20mgs of solumedrol would stay in my system. I get it IV push with each Rx.

Does anyone know how long it would stay in my system and if that low of a dosage could cause all of this. My neighbor takes 20mgs each day (I think)so it seems 20mgs every two weeks would be consider minimal?

I also am experiencing fluid retention.

I'm just a mess. I'm falling apart:)

Thanks Mrs D,
I'll stay we're I am if you say that number is pretty good. I do not take calcium because my blood work shows it is on the high side of normal. 9.6 & 10.

Thanks again:)

Steroids (IV push) only stay in the system a few days (2-4 I think), but you get it every other week. 20 mg methylprednisone is equivalent to about 25 mg of prednisone, I think...maybe 30 mg.

That is still a significant amount and I can't imagine why it would not related to the common side-effects associated with steroid use.

MrsD likely knows better details on the drug and half-life, etc....along with whether it's plausible that it could be the cause of your new problems at the doses you take.

I hate to :deadhorsebeat: here, but before going on cholesterol meds (I'd try niacin first, but that's me) I'd ask to have my testosterone checked—simple blood test.

I wouldn't say it's a possible cause, because it isn't really known yet which causes which, but low testosterone has been linked to high cholesterol, high blood pressure, osteoporosis, elevated ketones, and a lot more.

emphasis mine

Doc

Thanks Dr. Smith, I never thought go that one. I will also try the niacin. I have an appt in June I believe. I'll request the test for testosterone.

I have recently been thinking of going to someone who works on bio-identical hormones. I'm definitely calling someone now!:)

Hi everyone,
Just thought I would let you know my doctor now has a portal that I can get into. I was thinking all this time that I was getting 25mgs of solumedrol with my IVIG. It appears I have been getting 125mgs/2ml. That is a big difference.

I haven't been on because I've been pretty sick. I can't figure out why but I have had hives for over a week. I'm very nauseous and really tired.

I made a call to my rheum last week to inquire about the IVIG or Solumedrol causing HTN and high cholesterol. His nurse called back and said the doc said he was not certain but would research it. She told me if he didn't call by the end of this week to let her know and she can light a fire under him.

I had a IVIG RX scheduled for Tuesday and cancelled it. I think I have some decisions to make and want more answers before I continue these RX's .

If anyone has an ideas, opinions, suggestions for what I should do or what all of this could be I would appreciate hearing it.

Thanks
Hopeful

I think you know my opinion on whether the steroids is causing the high BP, high cholesterol, ketones, and of course it is causing the osteoporosis. I would say it's very possible on the first three, and probable/likely on the last one...which was the entire reason for getting off Cymbalta.

125mg every other week is significant...very significant. Do you mind sharing your dose of IVIG? I wonder if you can possibly drop the steroids down, while still getting the benefit of no/limited reactions (which is the purpose). I would discuss with your doctor about minimally dropping the steroids before your next infusion...and see how you do. If ok, then drop more the next time...and so on.

Have you had problems with reactions (ANY) either during or after the infusion? If not, then I bet you can drop that dose considerably without effecting the benefit. I'm not saying to eliminate it (cause you need it)...I'm saying to use the LEAST amount possible to achieve the same infusion goals.

I would also use your last bone density as a base to compare with another in 6 months or so (with a lower dose steroids) and see if your bone density improves. I would also journal your BP readings and cholesterol numbers & ketones and see how they improve as you drop steroid amounts. The proof is in the pudding, as they say. It can't hurt to try.

I agree with enbloc.

I think you need to re-evaluate the benefits if the IVIG. If you are not getting benefits, to offset the side effects caused by it and the then use of the IV Medrol... then stopping it for a while might be worth it.

Could you use an oral form of Medrol in smaller doses? I'd ask the doctor about that. Say, starting a couple of days before the IV and for 5 days after? 4mg once a day may help. Some IVIG patients do this with Medrol instead of the high IV Solu-Medrol dosing. After reading many posts on our MS board, I've seen people post that they cannot tolerate the SoluMedrol at all when used for MS attacks.

Using Big Pharma interventions often brings a cascade of problems. The drugs themselves cause problems, and also things like steroids, act on our metabolisms and deplete many nutrients, like potassium for starters. (also calcium, Vit D, folic acid, selenium, Vit C, zinc and magnesium)

Hi enbloc & Mrs. D,
Thanks for your comments. To be honest I'm unsure why the steroids were started in the first place. I know they thought I possibly had aseptic meningitis from the Rx. That didn't happen though until they tried to give me Rx's three days in a row. I'm never doing that again.

I couldn't believe it when I went on the portal and saw the amount of solumedrol. The nurse had told me he ordered 20mgs with my Rx's. Now I know why I had such significant s/e from it. No sleep, anxious (which Im not prone to) etc. I guess I should have paid better attention. I'm usually on top of all that. I just took her word for it.

I did ask the nurse once what company they got their IVIG from but she said she didn't know. Enbloc I now know( from the portal) that I get Privigen 400 mg/kg. I don't know much about what is the normal dose for IVIG. I trusted my rheumo on this one.

I am recording my b/p a few times a day. It has been significantly lower since taking medication. I am seeing my GP next month I am going to request he retest everything. He's new for me so I don't know what he'll do. My old GP went to work in hospice. That was a big lose for me. I loved him!

This is what I'm considering and I would appreciate your opinion. I'm going to request we take the steroids out of my Rx completely. Then I'm going to consider being done with the IVIG. The one thing I notice they do help me with though is the muscle weakness. That is getting worse especially going up stairs, my legs feel like lead. I have to stop when I get up to the top of the stairs and let my legs recoup.

Mrs D. I agree with you! Big Pharm products will do us in with the s/e's. I just had a discussion with my husband about asking the doctor if he will continue to see me and sign my disability forms if I refuse these Rx's. I am afraid if he is not making that money he may not. I hate to think that about him. He is definitely a doc who believes in taking the available medications. He says that's all they have to help us. He really is a good caring guy.

Please give me your opinions on my plan of stopping the steroids all together? I would really appreciate any knowledge you are willing to share with me.

I'm off to the dermo today. I've been breaking out in hives for about 9 days now. They come and go. Really bad at night. I actually put lidoderm patches on my hand and under my arm last night to lower the itching and burning. Ugh! what next!!!

I think my hubby probably is going to turn me in. (Just kidding) he's good about all this but feels really helpless.

Thanks again!
Hopeful

MrsD is correct...some use only small oral medrol dose a few days before and after the infusion with success.

I am able to get by with 5mg Dexamethasone IV, which is equivalent to about 25 mg Solu-medrol (what you 'thought' you were taking). I really think you have a lot of room to work with the dosing and bring the amount down.

Hopeful,

Sorry, I completely missed that you had posted right before I did, so didn't see it until now.

The steroids are typical protocol as a pre-med to IVIG...to avert reactions. I have ALWAYS received some sort of steroids before my IVIG. Many years ago, I got 40mg Solu-medrol, and now I get 5 mg Dexamethasone (about 25mg solu-medrol). I'm guessing you also get Tylenol and Benadryl as a pre-med as well...because that is also protocol.

I'm a bit confused about your dosing of IVIG. The typical dose of IVIG for primary immune deficiencies (what I receive it for) is 400-600 mg/kg. The dosing for neuropathy is much, much higher at about 2000 mg/kg. So what exactly are you receiving this for? I thought it was for neuropathy...if so you are getting a very low dose and maybe that's why you are not getting the full benefit.

I had received IVIG for 9 years when I got severe aseptic meningitis...so side-effects don't always come along right at the start. I stopped IVIG for several years due to this reaction...and was very hesitant to restart. However, my infections were one after another and I have drug reactions to ALL antibiotics, so my options were limited.

I honestly think the steroids is (at least partially) the cause of your recent side-effects (osteo, BP, cholesterol, and maybe even ketones), BUT that being said, I do NOT think you should get the IVIG without at least some steroids. IVIG is a blood product, so it is a foreign substance and therefore the body naturally tries to reject it...hence why they use steroids, benadryl, etc for everyone. The reactions from IVIG itself can be pretty rough. So, I think you should only reduce your dose of steroids each time, but not eliminate it all together suddenly.

Then you need to look at the IVIG itself...do you want to continue it. That comes down to what exactly you are getting it for (PLEASE pardon me for not remembering your full history). If a rheumy is Rxing then I'm guessing it's autoimmune disease related...as a neuro would Rx for neuropathy.

I would make a personal list what problems you had before, and assess whether any or all of these symptoms are improved (even little ones). Then determine whether something like IVIG is really worth the relief you get and is there anything else that can provide that relief instead.

Hope this all makes sense.

Thanks enbloc!
It does make sense. Do you get the whole 2000mg in one Rx? I don't know why my dose is so low. My rheumo & neuro speak to one another to decide on the dosage. My neuro did say he would recommend a few days in a row but that was when I got the aseptic meningitis so they went to one Rx every two weeks.

The nurse said the doctor cancelled the Tylenol & Benadryl when he added the steroids. To be honest I requested not to take the Benadryl. It knocks me out and my husband has to lose a few hours of work to drop me off and pick me up.
We really can't afford that but he would do it.

I was told the IVIG was for my neuropathy. The reason the rheum does it is because my neuro couldn't get it approved. My neuropathy is idiopathic. Even though all my blood test come back normal both doctors believe it is auto immune.

I wish I could take a little break and start over so I can see if IVIG really works for me. I just know it helps with my leg weakness.

The last time I tried the doctor was afraid I may not be able to get them approved again. The longest time I was off was a month. That was because I was hit by a car.

You may find this funny. I saw the dermatologist for my hives and she put me on steroids but it is a dose pack. Can't get away from them. Haha!!

I'm going to study all your information and discuss things with my rheumo and neuro. I have appts. with both in June. I'm considering taking a few months off from the IVIG.

I really appreciate all the time and information you & Mrs. D have given to me. I have some thinking to do. :)

I do NOT get 2000mg/kg of IVIG. I have primary immune deficiency...along with my autoimmune disease (Sjogren's), so I get the 400-600 mg/kg like you. My neuropathy is beyond repair and the ganglia is permanently damaged so the higher dose won't help me. Mine is strictly for my immune deficiency.

I guess your doctor's plan was higher doses at the start (2-3 days in a row is typical for neuropathy--and would have been 'closer' to the appropriate dose), but your reaction kept them from proceeding. Did they do a spinal tap to confirm aseptic meningitis? Headaches (even severe) are common with IVIG, especially multiple days in a row, so it could have just been the IVIG.

It's all very strange...the dose, and even who's ordering it. I don't understand why the neuro can't get it approved. It's the only way you would get it approved. IVIG is NOT approved for use in autoimmune disease by itself (in the US), so the rheumy would have to tag the neuropathy for insurance to pay. They seemed to have left you out of the loop for much of the discussion and what you've been getting. Then they dropped the benadryl...that should always be included. It's an antihistamine and always used to help avert reactions...as IVIG can commonly cause immune mediated reactions where benadryl is helpful. Sure it knocks you on your butt. You can also try Zyrtec...same class, NO sedative effect.

Do you have typical SFN symptoms...like burning, tingling, etc? If so, does it help with this? What type of neuropathy do you have that causes muscle weakness? Do you have MG? IVIG IS approved for use with MG.

Steroids for hives??? That is scary. Why not try an antihistamine first. Do you know what is causing the hives?

I agree 100% that you should have a sit down with both doctors. Have a list of questions on hand so you're better informed about their plan, dosing, approach, and what OTHER options are available.

Sounds like you have several things going on and someone needs to fine tune the treatment for you. IVIG may, in fact, be appropriate for you...but are you getting the full benefit if you're not getting the right dose for neuropathy? I would ask this. And your steroids can be (attempted to be) reduced, at the very least to help all these other side-effects you've been having. But don't stop the steroids suddenly...and consider asking about a zyrtec so it won't make you tired/loopy.

You have your plate full. How are doing without the Cymbalta?

Hi Enbloc,
My daughter graduated on Thursday so I've been busy with that. But it is a very good busy.

First about the Cymbalta, I'm really glad I came off of it. The withdraw was brutal but I feel much more with it. I requested the rheumy change me to Wellbutrin ( suggested by Mrs. D) and he agreed. I take 300mg per day. I think it is helping with the pain and I have a lot more energy.

I believe that what happened with the IVIG was my neuro tried to get it approved for SFN. That is what I have which was dx'd with a biopsy. He was unable to get it approved. He sent me to my rheumo because he thought I might have Sjogrens. I also was seen at the Sjogrens clinic at Hopkins. They said it was Sjogrens even though nothing came back positive but my eye test. They said that the lip biopsy could have been negative because they didn't get a gland that was positive. They also did another biopsy that they said did not show neuropathy. I did check out the lab my neuro used and it was one many people here have used. They are considered reputable. I do have to say the doctor in in the Sjogrens clinic at Hopkins was very cocky. He sent me for an ultrasound of my thyroid which the radiologist sent the report as Hashimotos. He disagreed with him too. I've had hypothyroid for 20years. I know as a nurse it is neuropathy. I have very symptom. I don't think there is any question in my mind about that. I just wish it could be found what caused it and not leave it at idiopathic. Both doctors believe it doesn't matter. They believe in treating the symptoms. I have to say both are very caring and smart doctors.

I believe my rheumo got it approved under the Sjogrens diagnoses & neuropathy. He still believes it is either Sjogrens or lupus that have not showed positive as of yet.

I now only see my neuro every 3 months. I feel that he thinks he isn't in charge of me anymore because my rheum gives me the Rxs. He did mention doing a muscle biopsy last time I was there. I believe that's looking for MG. What do you think? He said I would have a big scar on my thigh. I thought SFN could cause muscle weakness. Am I wrong?I've researched on the net and have seen many articles that say it can be a symptom.

My rheumo was talking about another lip biopsy last time I was there. I dread that it really hurt for days after.

I do have all the symptoms of SFN. The burning pain, tingling, what I call numbness, movements under by skin. I have lost muscle strength but my neuro said it didn't change from my previous appt. I feel the pin prick test he does but it is really dull all the way to the top of my thighs. It is the same on my arms. As I said I really feel the muscle weakness going up the stairs or if I try to hold my arms up. Such as blowing my hair dry.

The Benadryl was d/c'd at my request. As I said I couldn't drive home and can't afford to have my husband miss so much work since I'm on disability. He has his own business doing home repairs people aren't really happy when you take off mid-day. I love your suggest of Zyrtec. I'm going to call my rheumo on Monday and request he call me back. I'm going to discuss all we have been corresponding about.

As for the steroids with my hives. I think the dermatologist ordered with because I have had the hives for over a week. I also have had bad allergic reactions over the years. One not too long ago that sent me to the ER. I now have to carry a Epi-pen. When she ordered them I figured it may give me some relief from my neuropathy. Do you know if there is any connection out there between neuropathy and hives? They never are able to make a connection to anything that causes all of this.

Thanks again for all your help and information. If there is anything you or others can add I would really appreciate it.

Hopeful

Hi Hopeful,

I too am very glad you came off the Cymbalta. You certainly had a horrible experience doing so though. It's one of those eye openers to realize just how dependent our bodies become to a medication...scary!

I think I remember you being checked for Sjogren's a ways back and that doctors thought you had an autoimmune process going on that was the cause of your SFN...just couldn't confirm. SO MANY with Sjogren's test negative via blood work...up to 40%. But anyway, IVIG is NOT approved by the FDA for use in Sjogren's alone, so I'm sure he must have tagged the SFN on the diagnosis (as he should have) in order to get approval.

I'd be very interested (via pm if you prefer) to hear about your experience at the Hopkins Sjogren's Center. I have seen the neuro/rheumy there for years (since before there was even a Sjogren's Center). Some think he is quite cocky...LOL I think he's great, but again I knew him before he was at the center so we've had a long relationship...and plenty of disagreements...lol Something tells me, it's the same person.

Anyway, back to Sjogren's. It's great that you are being treated even though you tested negative. Like I said, 40% test negative...even some of those with negative biopsy. I have years of negative blood work, but had a positive biopsy. There is NO really good test for Sjogren's. Do you have the dry mouth/eyes, fatigue, joint pain, etc?

I had the muscle biopsy...and yes a large scar. Just don't let them do the sural nerve biopsy. That WILL definitely leave you with permanent numbness from the site of the procedure, all the way down the side of your leg and part of your foot...and again, that is PERMANENT because they sever the nerve to take a large section.

I am NOT aware of muscle weakness with SFN. It is well known with large fiber neuropathy, but as far as I know, SFN causes the burning, tingling, numbness, etc (surface features). Glenntaj would know about this and muscle involvement with SFN...maybe he will pipe in. I have had the very type of muscle weakness you describe (hard to hold arms up to fix hair, or do stairs, etc). Did you have this PRIOR to any steroids or IVIG? Has it gotten worse since you began either treatment? You can get myopathy from high dose steroids...OR just the autoimmune disease itself. Mine would come in flares, so to speak...then resolve after time, until the next wave.

As for a repeat biopsy...I would ask if the IVIG and/or steroids will possibly skew the results. I know the steroids will, because it changes any inflammatory process and the lip biopsy looks for inflammation in the salivary glands. It would easily cause a false negative by masking a inflammation. So that makes me ask...where you taking any steroids when you had the first biopsy?? IVIG can also alter many tests (since it affect the immune system), so you'd need to ask your rheumy about how it would affect the biopsy and/or blood markers for Sjogren's.

I don't know of any connection between hives and neuropathy (SFN)...but that doesn't mean there isn't one. Again, Glenntaj would know. But it does tell me that you have a sensitive immune response, so I would make sure you ALWAYS use some sort of pre-med with your IVIG (Zrytec or steroids or both--but lower dose on the steroids). Have you noticed the hive episodes only AFTER you started receiving IVIG, or did you have hive incidents even before you ever got IVIG? Your immune system is directly tied to your allergic responses, so the IVIG could be playing a role in this.

You say the IVIG helps the muscle weakness. Does the muscle weakness start to reappear just before your next IVIG, then get better right after...or has it been better non-stop since you started the treatment and you assume it's improvement was from the IVIG? If the IVIG is definitely helping the muscle weakness, then yes, the MG should be considered...as IVIG is a treatment for that.

Also, does the IVIG help the burning, tingling, and numbness?