Anyone taking prednisone?

Ihave been a frequent prednisone user since 1993. Seen high doses and low doses. It really varies with the individual. If you see yourself feeling worse on the prednisone the very first month then let your doctor know for it probably might not be helping it at all. But if you see improvement but don’t expect it to be a huge improvement. Small improvements slowly and gradually. When they started me on Prednisone in 1993, I was wheelchair bound. Too two years before I was back walking again.
Prednisone though was at one time a great drug for me. But because I have been long term it is not as effective on me as it used to be. Now they want me on a Chemo drug and are planning on giving that to me shortly. Sometime in May!
If it’s going to work you will start seeing some improvements but the nerves to regenerate might take some time! Hope this helps! Get well soon! Hugs
Linda H

I’ve been on pred for over 12 years now, but there was a bit of trial and error to see what worked and what didn’t. For me, I needed plasma exchange, IV-Ig and 60mg pred to see any improvement, and then a steady course of pred of decreasing dosages. When I got to 5 mg every other day, I started to relapse, so I had to start all over again :(. Eventually, we found my lowest dosage was 10 mg every other day. I relapse every so often and start again, but between relapses I’m pretty normal. I’m fairly active, go to the gym and do yoga. I just have minor balance problems and leg cramps.

So, I like pred. It’s cheap, and it works for me. I don’t like the extra weight, or the bone density loss I’ve experienced, but I think the pros outweigh the cons for me.

good luck! marie

I too tried Oral Pred, low then mod dose, as a second line treatment. Initially had the reccommended ivig treatments, stabilised and kidded myself i was improving just to get the tick so i could be discharged from hospital (in hind sight progress prob wasnt there but i was trying to be positive etc)My symptoms would increase within 10 days of finishing the loading 5 days of ivig so we tried o pred in combination with ivig (hoping the ivig would hold me while the pred started to work. Again i just deteriorated (was on 60 mgs daily) as well as twice weekly IVIG so after approx 4 mths of basically swimming in IVIG and popping pred we tried a triple combination on pulse steriods, immuno suppressant and ivig. From then on the progress began! There are many things to be considered with all forms/combinations of treatments and through full and open discussions with your neuro you should feel happy and safe in deciding your treatment options. Unfortunately the only way to know if you will respond to a sort of treatment is to try it. Some medical conditions may restrict the forms of treatment for you, but i would definately show caution on hitting the top shelf stuff (ie Rituxan) first off. (It is usually pretty difficult to get prescribed as well)
Other treatments may provide all the treatment you need without the added potential higher risk of side effects etc. My immunosuppressant is cytotoxic, and it was a huge mind bender for me to actually take it. At the end of the day though I was a quad and my autonomic system was being affected I had nothing to lose.
I can totally agree with you wanting to get on treatment that shows progress for you. My neuro said to me while i was on the ivig and o pred treatment – “If you see deterioration over a consecutive 3 day period – I want to see you!’ Of course if i had done something mad like fatigued myself one day the i had to but a bad day down to that. However for me it ws like if today i could clean my teeth, and dress myself and then tomorrow had trouble lifting arms to mouth to clean teeth etc, and then next day couldnt do up buttons, I was back in for assessment etc.
Hope this helps.
My understanding though of what to expect to see if pred was for me was a stabilisation and then very gradual increase in strength and ability etc with at least stabilisation and SOME CONTINUAL improvement in a 4 – 6 wk period. If no improvement then i would doubt your chances of pred working for you.
All the best

Hello again! Yep! That prednisone helped me out at the beginning. Just keep inn mind that with many of our diseases there is trial and error! What may work for one person might not work for another. I tried the Rituxan and that made me sick as a dog. But some have tried it and it worked. Each one is different. But don’t get discouraged because sometimes they do have to experiment a bit until they get you on the right regimin! Good luck!
Hugs
Linda h

It would also be a good idea to take famatodine to reduce acid production in the stomach and one of the bisphosphonates (Fosamax, Boniva, etc., or their generics) to help fight osteoporosis. This is true especially if you are taking large doses.

~MarkEns

I agree with Mark about adding those meds. They didn’t with me many years back and now I have osteosporsis. They keep a check on it though but now I have to take Fosamax because of it! Might also be why I am not absorbing B-12. Prednisone is a wonderful drug but as with any drug has side effects that can cause other problems. Especially if you have been on it a very long time like I have!
Linda H

[SIZE=”4″]I’ve been on them for almost 5 years. Its the only thing that has worked for me. Although, with all the vitamins, I’ve not got a bigger problem. See the new topic I’m going to start.[/SIZE]