I feel WONDERFUL.....and it cannot last.
 

Dearest Neuro Friends,

Yes, I feel wonderful. I wake up without pain, sleepiness, depression. It's a whole new world. It is the world of oral steroids. In my case Methylprednisolone (Medrol). 4mg of Medrol is equal to 5mg of Prednisone.

I've been taking 4mg every day since December 18. Almost a month.

I take the Medrol in order to be able to tolerate monthly IVIG. I had the first IVIG on December 19, and then next one will be January 16. With my Immunologist, we are taking this a month at a time, to get me through the winter. I have Primary Immune Deficiency Disorder, so my own immune system isn't adequate to protect me from infections. The IVIG strengthens my immune system, to keep me healthy.

So this is the thing. Long term use of steroids is very hard on our bodies. I've seen many long lists of the bad things it steroids do. There are almost no lists of the good things steroids do because they do it all, take away pain and sorrow over night.

Of course we are all different, and for some steroids are an immediate nightmare. But for me they are a release into another world. A world where I can keep my eyes open and see beyond my immediate pain, itching, swelling, fatigue, and sorrow.

I do have to be careful not to push too hard and too long, however, because I'm not "really' healthy, I just feel that way. So if I overdo, by night time I crash completely. Not in a scary way, but clearly exhausted.

Here's the thing: I would love to take this forever. 4mg isn't a LOT. I AM almost 72 (March). Many of the negatives of long term use of steroids are things that happen several years down the road. I might not even BE here. In fact, I didn't expect to BE HERE NOW.

I know people who take low doses of steroids regularly.

There is a method called :

ADT® (Alternate Day Therapy)
Alternate day therapy is a corticosteroid dosing regimen in which twice the usual daily dose of corticoid is administered every other morning. The purpose of this mode of therapy is to provide the patient requiring long-term pharmacologic dose treatment with the beneficial effects of corticoids while minimizing certain undesirable effects, including pituitary-adrenal suppression, the Cushingoid state, corticoid withdrawal symptoms, and growth suppression in children.
The rationale for this treatment schedule is based on two major premises: (a) the anti-inflammatory or therapeutic effect of corticoids persists longer than their physical presence and metabolic effects and (b) administration of the corticosteroid every other morning allows for reestablishment of more nearly normal hypothalamic-pituitary-adrenal (HPA) activity on the off-steroid day.

http://dailymed.nlm.nih.gov/dailymed...6-501b7b9f02d4

I wonder if I could try this. Or am I just foolish to want to continue with Medrol forever?

Yeah, probably foolish.

Foolish Hugs to everyone,

Elaine

Heck if I know :)
 

Yes, the every other day treatment may work. And you may NOT need a higher dose either. I think 1) you have some inflammatory thing going on. I'd get the drug induced antibody testing (not ANA ) for lupus.
http://emedicine.medscape.com/article/1065086-overview

You are taking some long term drugs.... and that is when drug induced lupus appears. Your diuretic is already on the list for this.

If you have drug induced lupus and that is why you hurt so much, then removing the causative drug(s) is the answer. I would have this done before embarking on steroids.

I took high dose with a taper prednisone when I had a very serious necrotic spider bite on my left ankle bone, several years ago. I felt wonderful at the 50mg-10mg doses, then crashed painfully when it was over. I sort of rebounded within a week to a tolerable state fortunately. But it was indeed fine while it lasted.

I am getting some benefits from the dried red cherries too. At least I am not limping as much. But I avoid steroids because they raise blood sugar (as well as for the osteoporosis risks, and the necrotic hip that can happen).

I have severe osteoarthritis too, I have Heberden's nodes now appearing on some fingers. They seem to go down some when I use the magnesium lotion on them. I have lots of X-rays on joints showing spurring etc.

2)I'd wait a while before changing this treatment. Sometimes there is a plateau when the steroid is no longer strong enough.

I still get the best results from plain old aspirin. But I won't use that everyday either. Bayer has a new one called Advanced... which uses nano technology for rapid absorption. That is the one I use now. But I also use AlkaSeltzer for the same reasons...fast absorption, little if any stomach damage.

Dear Mrs. D.

I have Sjogren's Syndrome, Interstitial Cystitis, Meniere's Disease, Anemia, Copper Deficiency, Severe Coronary Artery Disease, Severe Osteoarthritis, Blepharitis, Severe-Profound PN, and Primary Immune Deficiency Disorder, also some autonomic problems like dizziness and sudden sweating from the head.

I've been tested every which way from Sunday for just about everything since I was a baby, and I'm now 72 in March. I don't take Plaquenil, or any Chemotherapy drug.

I do have IVIG monthly for my CVID (my form of PIDD, which has a high probability of autoimmune conditions as well.)

I'm taking the Medrol so that I can tolerate the IVIG since my immune system rejects so many things: Sulfa, all RX Pain meds, and weird things like Elmiron and some of the anti seizure drugs (Lamictal and one other).

I was first tested several times for Lupus at 22, and subsequently, but perhaps not the tests you indicated. I NEVER have positive blood work for any autoimmune condition, and my IgE is at the lowest end of normal. This seems to be fairly common for those with PIDD. I had SEVERE eczema from birth until age 27 when it disappeared.

Before Medrol, I managed pain fairly well with Aleve, Cymbalta, and occasionally Tylenol.
I also take Omeprazole to offset the gastric problems of Aleve.
Turmeric twice daily,
30000 units of Fish Oil, 80 mg of Lipitor (yow!), 50 mg atenolol, Triamterene-HCTZ (for my CAD, genetic cholesterol, and HBP)
Pilocarpine and Nasonex for symptoms of Sjogren's,
D-Mannose for UTIs,
a probiotic, Methyl B-12, Vitamin D,
NAC (for Meniere's), Iron (for Anemia), Copper (deficiency),
Potassium (leg cramps), Estrogel and Testosterone Gel,
baby aspirin, Co-Q-10, Alpha Lipoic Acid
DHEA
And I've ordered SAMe to try again, which I tried several years ago.

I'm 5'9 and weigh 184. I exercise two or three times a week at the health club in the pool, or with the variable resistance machines.

When I was found to have the Left Anterior Descending Aortic artery 95% blocked at age 57, I was quite sure that I wouldn't live to see 60, never mind 70!

And since 60 all of the conditions listed above except for the Osteoarthritis have developed. So longer life is a mixed blessing for sure.

On the other hand, I was able to host my French grandchildren every summer for six week at a time, for nine years, from ages 5 and 7 to 14 and 16. And travel to Paris each year, as well. So there have been many blessings in my life.

I am basically an optimist (in spite of the expectation of death by 60!)

The PN has changed my life most. The Osteoarthritis causes the most pain. The PIDD is a total surprise and the most interesting thing I've encountered. I still expect that the CAD will be my curtain call, suddenly I hope!

Hugs, Elaine

Elaine,

I have heard of ADT, but don't believe you escape the all side-effects of long term use with this therapy.

I completely understand your position at your age...and might choose that path myself if I was that age.

I have had steroids on/off for the last 17 years and I can say it DOESN'T take years to get the negative side-effects. I had osteoporosis within just a couple years (by 34), and got my titanium knee (which I attribute to steroids) in less then 6 years. I am only 49 (but that will change tomorrow--lol) and have (had for years) paper thin skin, swollen fat pads on the collar bone (typical of cushings) and I'm pre-diabetic...all thanks to steroids. I also had bilateral avascular necrosis of the hips in less then 2 years of the first steroid dose (but it was a higher dose).

Sure the rewards from steroids are great, but the price is high in the end. I'm still paying the price and I haven't taken oral daily steroids in many years.

It's obvious you have an inflammatory process since you get such immediate relief with the steroids. But I would wait to see how you do for a while before changing this dosing...it has only been a month. Your body is still adjusting to the IVIG and the steroids.

That being said, I still get an IV dose of steroids with my IVIG every month (to avert reactions). But i won't take daily oral steroids again, if I can help it.

en bloc----Welcome to the 50's club (tomorrow) :)
 

Dear en bloc,

I'm so sorry you had so many terrible long term consequences of the steroid therapy.

I know this is the very reason that no responsible doctor will put a patient on long-term steroid use unless it is a matter of life and death.

I know patients who plead to continue on steroids and who are so angry when it isn't allowed.

It is the same thing with long term use of most opioids. Good doctors just don't do it in good conscience unless there are overwhelming reason to do so.

In my case, I think that a very low dosage, perhaps the ADT, would be possible.

Or, since I take Medrol to tolerate the IVIG, and my reaction doesn't start until 48 hours AFTER the IVIG, I could do a short taper at the time of each IVIG.

Right now my Immunologist is trying to get me full of IgG through the winter months, since it is CLEARLY WORKING so well for me.

And I do have the autoimmune conditions that go with CVID, my PIDD that I have IVIG to treat. That's why I have a total immune response to the IVIG, 48 hours later. My immune system is really upset by the 'foreign IgG and other stuff" that comes with the IVIG.

All of this will be dealt with carefully and with patience, persistence, and acceptance of whatever is next.

Hugs, Elaine.

I would, at your age, elect to continue the low dose steroids if it made that big a difference to my quality of life.

Your comparison to opioids moved me to respond. I am on opiate therapy and will likely be for the rest of my life. It enables me to have a quality of life which I otherwise would not be able to approach. I have never enjoyed television, and I really do not know what I would be able to do other than lie under an electric blanket and stare at the screen, the pain and resultant disability are that bad.

My doctor carefully explained to my husband and I what we were in for long term when he moved me to time release morphine. I know how lucky I am to have a doctor who was willing to monitor this as the neurologists refused to handle pain management and just wished me a tearful farewell. Empathy is great, and rare enough in doctors, but not all that helpful in the end. Our PCP has known our family for many years, since he opened his practice, and was comfortable taking this on as my diagnosis is is consistent with severe pain.

I am still progressing, but at least I am able to take the increasing disability in stride without suffering from increased pain as well. And I can choose how to use my limited energy- a walk in the park with my husband and the puppy is worth the rest of the day on the sofa.

Quality of life is the main issue when treating incurable diseases. I understand that there may be other considerations in younger patients, but at a certain point it becomes the only issue.

Trust me, I have had my moments of asking (maybe even begging) for steroids, just to get through a tough spot/time. There are times that it is really necessary also.

The amount I get now isn't small, but just one dose every month. I would not be able to handle the IVIG without it. I also get a typical full immune response about 48 hours after the infusion.

I think your dose is small and likely manageable. Just watch for signs and get regular bone density scans, blood glucose etc to make sure the status doesn't change.

Funny you mention the opioids. They do NOT destroy the body like steroids...but of course are highly addictive. I have to have something for pain (and have tried cymbalta, lyrica, neurontin...ALL of the others without success), so opted for NO daily steroids and to use small amounts of Percocet. There is a down side to every option and you're right...doctors struggle with either of these options. I'm hoping I can stay at small doses for a long time (have already gone 2.5 years and still not over 5mg a dose). I fully expect that my pain mgmt/meds will progress over time...I just hope it will be slow. Had a long talk with my doctor about the use of these...and the need for RESPECT of a drug like this. Actually ALL drugs need to be respected for many different reasons... (statins, BP drugs, antibiotics...EVERYTHING).

I think you all looking at this in a reasonable way. I would just give it a little time before making changes.

Elaine, if you continue with the Medrol...keep in mind that
the Prilosec, and Cymbalta also have osteoporosis warnings.

http://www.ncbi.nlm.nih.gov/pubmed/22659406

It might be a good idea to get a Dexa bone density scan to establish a baseline, to compare to in say, 6-8mons while using the steroids.

Am I seeing 30,000 units of fish oil in your list? Do you mean 3,000mg? The highest I have seen in patients is 15 capsules a day and that was a fellow who had some autoimmune kidney damage.

Enbloc.... Happy Birthday to you! I hope you have an enjoyable day tomorrow! :Birthday:

Thanks Susanne C for the post on opiate use
 

Hi Debi,

the key to pain is to keep it 'in the box'.

It is easier to keep pain under control with regular dosage that it is to get it under control once it has escalated.

I take my pain medications regularly.

I know many people who insist on taking pain medication only when the pain gets bad. It takes MORE medication to bring the pain under control that way.

It is also very hard on your system to have that stress.

I hope your appointment at Emory is the beginning of a new stage in your journey.

Hugs, Elaine.

Thanks Elaine :)
 

Good thought, Mrs. D. I think my last bone scan was in 2007.

I have always had amazing bone scans, very very bright white bones, no osteoporosis.

But anything is possible.

At least I don't think I've had a bone scan since 2007.

How time does slip away when you're having fun!

Hugs, Elaine

Elaine,
 

I also take my pain meds on a regular basis. I have a Pain Management doctor that has been prescribing for the past few years. Did do the usual spine procedures/injections, SCS trial; but the only thing that seems to help
me get some quality time, in spite of 24/7 pain, to a level is as you mentioned; is taking meds on a regular basis.

I am on a pretty high dose of narcotics; take 60mgs. Oxycontin every 6 hrs, as well a Percocet for breakthru pain. Unfortunately, the dependency for reducing pain is part of the end result.



Gerry

Pain has no beginning or end....when I'm in pain it is all that there is.

I would do anything to make it stop.

I cannot take RX Pain meds because my Immune system rebels so completely that it is as bad as the pain.

I really want to be unconscious.

The problem with RX Pain meds as they exist today is that most of them, for most people will not continue to be effective over the long term.

They work, they have to be increased, and eventually not only do they not work well, they cause 'rebound pain'.

Unfortunately they are also highly abused by many many people, who take them to escape from life, rather than physical pain.

These are the reasons why for most people it is very difficult to get long term prescriptions for RX Pain Meds.

Doctors are closely monitored by the DEA when they write prescriptions for Pain RX, and they are called if they prescribe too often or too much for patients.

My heart goes out to those who rely on pain RX, because medical science hasn't really managed to address the issue of pain that will provide safe reliable relief for us.

I do not know what I will be able to do when I have to face excruciating pain. I've been sent home with knee surgery, on Tylenol. I use Cymbalta, Aleve, Turmeric, and Relaxation and Meditation to manage now.

Hugs, Elaine

Elaine, I really can't let some of these assumptions about long term opiate therapy go unchallenged. While everything that you said is true in some cases, it is very one sided.
Many people are able to be maintained for many years, more than ten, on the same dose, once an effective level of pain relief has been reached. The reason for escalating dosages in many cases is the ineffectiveness of the original medication. It is the nature of opiates that you cannot necessarily start out with a dose sufficient for moderate to severe pain but have to work up to it.

I dislike being an apologist for narcotics but I have done a lot of research as I am likely to be on them for the rest of my life. Medical journals, books, and periodicals like practical pain management give examples of long term studies, longevity studies, etc. which show that the stereotypes you mention are not the whole story. Opiates are still the safest and most effective pain relievers we have, with a track record thousands of years old, and it never ceases to amaze me that while many anti-depressants are also addictive, and in the case of Effexor, may never be able to be discontinued, no one makes a peep. It is much easier to discontinue morphine!

I am sure that you do not mean to make it sound as if everyone on these drugs is on them for psychological gratification, but that does come through. I can assure you that as a college student in the 1979-1982 period I know what getting high feels like. I have yet to duplicate that feeling despite the heavy doses available to me. I can, however, make dinner, help my son with his schoolwork, and go for a long car ride.

Rebound pain is much more talked about than actually documented. I even discontinued my morphine for a while when the burning skin symptom started. Unfortunately while my legs hurt much more the burning did not go away. It is just another of the weird things SFN can do. Most of the things I have read about rebound pain either discount it as rare ( articles by pain doctors) or use it as a scare tactic.

If someone's symptoms respond to other treatments, they would be wise to save the heavy hitters for the day they really need them. For some of us who are only getting worse and for whom there is no treatment that day is now. It is unfair to paint with too broad a brush. At 52 I know that this is what the rest of my life will look like, that a wheelchair is in my immediate future, that I go upstairs on my hands and knees now and will not be able to do even that someday. I am grateful for the level of pain relief I have and hopeful that I will be able to stay at this dosage for a long time.

Susanne,

Thank you for your response.

I for one, have been on the same dose of Oxycontin for the past few years, along with the Percocet. I have 24/7 pain from spine/PN issues; but today the level was about 6
(at times has been much higher) Today, I went for my appointment with PM doctor's assistant. I am given a once a month pick-up date for the meds. Without prior knowledge, I, as well as all those on these type of meds, are given a urine test to be sure the meds are not being abused.

If you noticed; I did Not mention being "addicted"; but "dependent"........Dependent for some pain relief so I can at least get thru the day and actully accomplish, laundry, make lunch and dinner. Now my cooking is not as good as it once was because I make the easiest, least complicated meals.

I will be on these meds for the rest of my life. I started on a lower dose which was gradally increased until a tolerable pain management was/is accomplished. As previously mentioned, I have been on the same dose for the past few years.

Never...never....has there been any high; just the ability to be there and enjoy some time with my husband, children, and grandchildren. Fortunately, the Oxycontin/Percocet, does not put me in la la land, but in a place where the pain is more tolerable.


Gerry

Yes, Gerry, I should have edited addicted to dependent. Addiction is a psychological response and dependency is a physiological response.
I am on 30 mg MS Contin three times a day with 7.5 Percocet for breakthrough pain. I am supposed to start on Baclofen for muscle spasticity, but still waiting on Cigna pharmacy. I have hereditary neuropathy as well as spinal arthritis and the pain is unrelenting and distracting. I would have no quality of life or ability to function even in a limited sense without the meds and I am sure I would be a burden to my family.

There is really no relationship between appropriate and inappropriate uses of these drugs and it is hard for those of us already suffering from chronic pain to be further stigmatized by the assumption that there is.

[QUOTE=Susanne C.;1043932]Yes, Gerry, I should have edited addicted to dependent. Addiction is a psychological response and dependency is a physiological response.
I am on 30 mg MS Contin three times a day with 7.5 Percocet for breakthrough pain. I am supposed to start on Baclofen for muscle spasticity, but still waiting on Cigna pharmacy. I have hereditary neuropathy as well as spinal arthritis and the pain is unrelenting and distracting. I would have no quality of life or ability to function even in a limited sense without the meds and I am sure I would be a burden to my family.

I have a few things to say.

First: Enbloc I am sorry I missed your birthday. So happy belated!!:)

Second: Elaine I don't think I have ever heard anyone on here say they were pain free. That is awesome for you. It is actually my dream. I always say I just want to wake up pain free for one day. You sound like you have managed to achieve that.

I also get 20mgs of solmedrol with my IVIG. Not sure if it makes any difference. I don't believe there will be any long term effects with this once a month dose but I could be wrong. I just got a script for a bone density for a baseline just in case.

Third: Susanne I believe you also have SFN as I do. Some people on here may remember me saying that sister had a severe case of RA. She started taking narcs and became so bad she began the doctor shopping, alcohol use etc. She is no longer with us. So I'm sure everyone can understand my hesitance to use them.

Now that being said, I live with a pain level of 7-10 on a daily basis. I actually tell my husband most people would be in bed screaming and tearing their hair out. I have tried almost every drug out there. The doctor just started me on Enbrel last week and now wants me to try Keppra. I said I wanted to wait until I see if the Enbrel works.

A few months ago I had a flare up so bad that I could not stop crying or get out of bed. Well, I finally gave is and took 5 mgs of Percocet 3 times a day for a few days. It really helped. I'm still afraid but after that I have started taking 5mgs a half hour before a walk that I have begun almost everyday. Well guess what it gets me through my walk! It even stays with me a little while. My pain reduces to about a 5-6. Which is good for me. I asked my doctor to give me a script for 5mgs once a day (so far). I think I will go higher if need be in the future.

I wonder why everyone (myself included) reacts so negatively to narc for the type of pain we all suffer. Some of the side effects I have experienced from the meds I have tried and am taking make dependence on something seem minimal. I know I have a great support system and if they thought I was doing something I shouldn't they would tell me. Quite the contrary they encourage me to use the narcs if it will give me a better quality of life and I believe it does. :)

Oh yes, hopeful, I would take narcotic drugs in a heartbeat if I could.

I know you can become dependent, but the difference between addiction and dependency is huge. When a medication is taken for pain relief, rather than to deal with life, there may be dependence, but not addiction. No one would say that a diabetic is addicted to insulin for example.

I've actually never experienced anything like a 'high' with any narcotic except one.

When doctors were searching for something that I might not have such a terrible reaction to, one came up with an older narcotic called Talwin in 2010. It had been around for over 30 years, and wasn't used much.

I took the first dose, the pain went away, and I felt marvelous, floating and wonderful. When it wore off, I looked forward to the second pill.

And all hell broke loose. My lips swelled, my eyes swelled, and I had that terrible stabbing itch that is more like huge wasp stings over and over all over your body, and burning skin.

After the Talwin my husband just kept loading me up with Benadryl, and I didn't have to go to the ER. But I was completely out of it the next day. And THAT day I tore the meniscus in my left knee, jamming a piece in my knee joint.


To go through the next FOUR MONTHS of excruciating pain, surgery and recovery with only Tylenol......well, I did it.

And so I have for all of my pain, Cymbalta, Aleve, Turmeric, and relaxation and meditation.

But since I started the Medrol (Methylprednisolone) most of my pain is gone. Since most of my pain is from inflammation, the anti-inflammatory effect of the Medrol relieves my pain. I still take Cymbalta, of course, and the Turmeric. But I've stopped the Aleve for now.

And of course many take narcotic medications successfully for years.

Research has shown that those who become addicted have a difference in their brain structure that the addictive substance addresses, to increase their sense of well being.

Most of us don't have that brain structure, and don't 'feel better', just have less pain with narcotics.

And some of us cannot take them at all.

Hugs, Elaine

Susanne,
 

As mentioned in a previous post, I am on 60mg Oxycontin every 6hrs. which equals 240 mgs. in a 24 hr. period. (I set my alarm for 6:00 a.m., along with the Oxycontin and a bottle of water to stay on the 6 hr. routine).

I also use the 7.5/325 Mg's Percocet for breakthru pain. I am prescribed up to a max of 4 per day. I have been using Vallium (diazapam) for muscle pain/anxiety, although it is not prescribed for the anxiety, but the muscle pain. It really has helped with the terrible shoulder and neck spasms I have had for way too many years. I actually got started with the combination of the Vallium with the Percocet (a few times a day, taken together) when I had my spine fusion surgery 8 yrs. ago. The nurse, at the time, told me they work better together. I have been taking 2 to 2 1/2 5mg's a day. The additional plus side of Valliium is the lessening of the neck/shoulder pain. I had not been able to lay on my left side for many years; now I can.


Gerry

I had the second IVIG yesterday, 30 grams of Gammagard, with no problems. It only took two hours, which is almost as fast as subcutaneously infusing 10 grams each week at home. A very easy process for me.

I've been on the Medrol since before the first IVIG, on December 19.

My third IVIG is scheduled for February 13, and I wonder if my Immunologist expects me to continue on the Medrol through that IVIG?

I've sent her a message through the Duke system, since I will be out of Medrol by February 6, and certainly can't just stop after the last 4mg dose.

It still has me feeling better than I have in years. And the IVIG has kept me completely free of infections since I started on IgG infusions at the end of August.

Perhaps the improvement in my basic health with be enough to offset weaning away from the Medrol when the time comes!

Staying tuned.

Hugs, Elaine