Re: tapering prednisone (from Joan)

[Guest guest]

I am extremely lucky in that when first dx'ed with pulmonary sarcoid, my local pulmonary dr. told me that I had a choice ... I could go on Prednisone and get better fast and have a chance at not getting lung infection after infection after infection, etc.; the second choice was that I could opt to refuse the prednisone and only take the solumedrol packs when sick with a lung infection for the next 18-36 months. He indicated that "the disease will run its course and most likely go into a complete remission ... and that would be that".

I knew nothing about Prednisone or Sarcoid at this time. I chose to not take Prednisone... put up with the lung infections (which I had every other month) and take my antibiotics and solumedrol packs for the next couple of years. In addition to the frequent lung infections, I had the skin lesions on my legs and breasts for years ... 11 years before even dx'ed with sarcoid!, and I managed to somehow get through the arthralgia pain in the wrists and ankles ... I always felt like I had rubber bands wrapped around my veins in my wrists. I endured walking like a 100-year old woman, wondering if it would ever go away for real.

Well... my lungs went into remission, however, the disease turned neuro. Would I have developed NS if I had taken the Prednisone?...I'll never know, but my guess is that I would have. This disease has a mind of its own ... if it wants you, it's going to get you. I was already one of the few chosen ones -- steroids or not. I was already multisystem long before dx'ed.

Once I started with the spine pain that was unbearable, that is when I would be willing to take or do anything just to stop it. In the end, I'm very glad I never took the Predisone (although, I would if I had to in order to stop that kind of pain) ... my local docs had no idea I had turned neuro yet, so we weren't in a panic to stop the disease. I treated with pain meds that only made my mind tolerate the pain ... they really didn't take the pain away. Then they stopped working in my mind. By the time I finally left work for the last time, I didn't care what happened to me ... I just wanted the pain to stop.

After 6 months of going from dr. to dr. trying to figure out what was really going on ... well, by then I had already joined this group (by the Grace of God!) ... and I already knew ... anyway, 6 months after leaving work, I was put on Methadone. 3 months later came the plaquenil and MTX ... oh and a very long list of lots of other "usual" things ... Neurontin, Nortryptilline, Paxil, Xanax, Lortab ... these were all just for the various pains and depression ... I have finally reached a point where I can move about the house without falling down the stairs, without crying or grunting with every move. The ones I can never-ever-ever be without are the Methadone, the Neurontin, high-dose anti-depressant, and Methotrexate.

Just thought I'd share in case those meds would help others get out of the pain they seem to be stuck in.

Prayers all are without pain ...,

Joan

It is so important that you follow the instructions of your MD in getting off steroids. That even means Pred Forte eye drops. This is because of the richochet effect that happens as you discontinue them. Weaning can happen many ways. For instance, when I was on 80mg a day, it took 2 1/2 years to come off it. I'd go down 10mg a month, then have to go back up 5 mg-- if I had any signs of flare. When it got down to the last year- it was then that we went every other day, then down 1 mg at a time over the last few months.The next time they put me on them-- it was started at 60mg every other day-- and it took 15 months to get off them. It is frustrating, and all I can say is hang on. If the side effects of increased pain, shortness of breath, anxiety, whatever- is too bad, then ask about going onto Plaquenil or Methotrexate and working up on the dose of them, while you taper off the prednisone.This is so important for those of us that had to get off them because of the side effects.For me, high dose prednisone makes me psychotic, physically abusive (I have taken swings at my hubby while on them-and no, that's not me!), as well as the weight gain, the blood sugar issues, and the increased joint and muscle pain. It never helped me-- just made all the bad stuff worse. So it was not a good choice for me.Arthritis.org has the drug issue-- and it lists many steroid sparing alternatives. Take it with you to the MD (you can go online and print it out--it's about 12 pgs) and talk to him about what else may work.TracieNS co-owner/moderator