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?