RA and PRED

Hi, can you share with us what your prescribed prednisone dose has been? Also knowing methotrexate traditionslly has many side effects including lowering our immune systems and triggering other conditions, what dose you take of this and side effects you may have from this chemo medication? Thanks so much.

Anna: Do bear in mind that methotrexate used as chemotherapy in cancer and other things is at far far higher doses than that used in rheumatic disease. The whole point of most of the medications used in autoimmune disease, which RA is, is that they suppress the activity of the immune system.

Everyone reacts a bit differently to everything - pred has 82 listed side effect - some people get almost none, no-one gets them all. I have been on 3 different froms of corticosteroid. Prednisolone was OK, the weight I'd put on through being unable to exercise redistributed but I didn't put much more on. With Medrol (methyl prednisolone) I had horrendous side effects: massive weight gain of the Cushings type, skin and hair went mad, muscle wasting and a lovely black beard. Which might have been more acceptable had it actually dealt with the pain and stiffness but even 20mg didn't work. I was then switched to a form of prednisone where 15mg immedaitely did more than the 20mg Medrol and I have now reduced to 4mg. In the meantime, with a bit of application, I have lost 36lbs in weight, the muscle wasting has reversed and my hair and skin are back to normal and the beard has disappeared.

Thats amazing that things have turned around for you involving the other form of prednisone..Can you tell us what this is? I am experiencing some muscle wasting at this time and hope to stop this..also bight white facial hair along my chin area that must conseal..Yes, we all experience different effects from the RA immune suppressing drugs and chemo medication methotrexate. Literature does warn us about the high toxicity potenfial and others experiences regarding this. It has been difficult to find very many positive results when using tbis with RA when searching.

Am I right to think you are in the US? 

The prednisone is a delayed release form which is marketed under the name of Rayos in the US and Lodotra in Europe. It is approved for use to minimise morning stiffness in RA and you take it at 10pm, before bed, and it releases 4 hours later so the peak blood level is at about 4am - so acts immediately on the cytokines that cause morning stiffness when they are released about 4.30am. The hope is that it will not only be more effective but also that lower doses will be required so the side-effects will be reduced. That is certainly the case for me.

Unfortunately a directive has just been put out in the UK that it shouldn't be used on cost grounds. It is far more expensive than any other form of corticosteroid simply because of the time-sensitive coating and it is probably also still under patent. I get it because I live in Italy and it is the only alternative to Medrol here - which I obviously didn't tolerate very well!

I used to take a banana and drink upstairs at bed time to have at 4 or 5 am so I could take prednisolone and a painkiller at that time, which  helped morning stiffness incredibly. Don't need to do that now as Rituximab working.

....oh and just to add to your point about methotrexate that max methotrexate dose for RA is one tenth of chemo strength. I suspect that many are helped by it and therefore don't end up posting on forums. That s not to ignore those that have had a bad experience from it, but I d hate to see anyone dismiss it without trying it out especially as you are monitored closely for adverse effects.

That is something I usually say on my "own" forum - that we on the forums are the exceptions rather than the rule!

The study they did before developing Lodotra/Rayos found that the optimum time to take ordinary white pred tablets was at 2am - hence the time delay coating to save us having to set an alarm and have a disturbed night. I and my mates have PMR - the only option is pred so you can imagine the fights we have with terrified doctors! We should only need a low dose that won't have too bad long term effects but they rush us into reducing which in itself creates flares. And they try to get us to use DMARDs - which are a waste as they don't work for the majority.

I wasn't sure about the relation between chemo dose and RA doses - thanks for the information. That's part of the reason I hang out around this forum - I learn a LOT!