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

Hey there Elaine.....I went though a 5 or 6 day run with the 4mg and it's when we went to Fl week before last......I felt like a new person Sun, Mon and Tues. Started going downhill on Wed afternoon. It was so nice to feel normal again. I, like you, didn't overdo it and we wound up coming home a day early because it all kicked back in again.

But I saw what long term steroids did to my father in law and it wasn't pretty. Of course he was taking mega doses a day but it still scares me. My PCP decided to try a round just to see if it would help my left foot. Nope, nada. Going to say whatever is wrong with my left foot must be small fiber related.

I'm sure you will get many posts on your thread.

Debi from Georgia

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.

HAPPY 50TH BIRTHDAY.....a day early !

Hope you have a wonderful and pain free day.

Debi from Georgia

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.