Do those of you who take Prednisolone for PMR/GCA, or for anything else for that matter, and have RA, know what maintenance dose of pred one should take? Also, does anyone just take pred alone for RA?
My maintenance dise is 5 mg daily..althiugh not everyone is given a maintenance diose. Because prednisone is not advised for long term, it is typically adoctirs goal to get you off from this, or at least to get yiu at an extremely low maintenance dose. An anti inflammatiry medication is critical in treating and maintaining RA. No it is nit at all advisable, medically sound or ethical to treat RA only with prednusone.
I know most people don't like to take Prednisolone over long periods (this has been discussed on this site before!) but I HAVE to take Pred for PMR (have now been taking it for over 3 1/2 years, now down to 7 mg again - I recently had a flare).
My question was really a query about other things rather than DMARDS - not well expressed, I agree! I've tried two - MTX and Sulfasalazine. Neither agreed with me as I have stomach and esophagus problems. I fear most DMARDS would be the same.
yes I was answering your questions about prednisone use and elaborated on yoyr questuon about whether anyone has ever only used prednisine as treatment.
Hi
I have never been on Predinisone, so I don't have any informaiton. But you mentioned soemthing about MTX and esophagus problems. Did you develop esophagus problems becuse of MTX?
No! I had stomach ulcers some years ago which I presume were responsible for the esophagus troubles later on.
As for MTX I have a phobia about it so am the last person who can answer your question.
Have a good day. Regards from C.💐
Hi Constance
i only have RA but on 5 mg pred currently while waiting for other meds to work. I understand it's a low dose.
Another DMARD is hydroxychloroquine. Has that been suggested to you to hold back joint deterioration from RA? I would think it s important to find a DMARD you can take otherwise the disease will simply progress.
hope you find an answer for your own situation.
Thanks Rowbirdie
In the meantime I have found out that it is NOT RA but OA. My Rheumy isn't much good I am afraid. I have had the results of blood and x-rays and 'only' have - active OA, Gout, and of all things Migratory Arthritis (a weird type of arthritis that hits different parts of the body for a few VERY painful days, then disappears - only to start up in another part of the body at some later date).😡
Apart from all that I still have active PMR so am stuck on pred for some time I fear (at the moment 6 1/2 mg - after nearly 4 years!)
However, I am relieved it isn't RA, i.e. bones, so I won't need DMARDS. I have tried two - MTX and Sulfasalazine - both made me sick and dizzy.
Have a pain free weekend. Keep smiling😄.
Regards from Constance.
That s great it s not RA..... Thanks for letting me know! But sorry you still have lots of pains .
I ve had a good week and trying to build more exercise into my week.
Regards
Hi, I have had PMR/ now RA and I was on Prednisone for 2 years for the PMR During that time I tried to reduce but hit the wall at 5mg. This is a warning to everyone on long term prednisone, it is hell to get off it!! You get bounce back so you think you still have the disease. My PMR had gone but when I reduced my prednisone by 1 mg a month I got very sore legs and arms, very fatigued. I was determined to get this drug out of my body, my Dr and Rheumy tried to persuade me to stay on 2 mg for the rest of my life but I had the bullet between the teeth, now on methotrexate which is a prednisone spacer and supposed to help you with the reducing dose of prednisone it was still a nightmare. I ended up reducing by 1/2 mg per month.
it took 4 months after my last dose to feel well again. Now I just take Methotrexate for the RA with the occasional paracetamol for flares of pain.
hope my journey of hell to get off prednisone helps. I found very little information out there so at times I was sure that the pain was RA, but it was prednisone bounce back! You have to go very slowly and carefully under Dr supervision, it is sometimes impossible to start your adrenal gland back up again after prednisone use ( both high doses and long term low doses) so please be careful with this drug. It is a wonderful for taking away inflammation and pain, but you pay later.
Thanks for your comments, Granny. (which is probably a laugh, because you might not be any older than me - 76)!!
I do realize that Pred is addictive, I have had PMR for 4 years (very a-typical - ESR 132 and CPR 100+ when I started). It 's been a long journey. Luckily, one year ago, I found this forum and it has helped me to understand and deal with this pesky illness.
I too had a flare at 5 mg - a lot of us do - and had to go up to 10 mg for a couple of weeks. Now down to 6 again and, on doctor's orders, must reduce by only half a mg per month from now on.
I can't take DMARDS. I have tried two, MTX and Sulfasalazine, and was allergic to both.
It appears now, as title suggests, I haven't RA but OA, Gout and Migratory Arthritis. I cope by taking Pred and pain killers (only 2, max 3) per day. If I have to take these for the rest of my life - so be it!
One thing I have learnt very recently is to stop worrying and take life as it comes. There are soooooo many people worse off than me. Life's too short - I intend to enjoy whatever is left of it.
Kindest regards from Constance.💐
This to both of you, Granny and Constance too (although I know that you know most of this post already).
Can I just say: pred is NOT ADDICTIVE. Your body may become dependent on it but that is a very different matter.
Granny (and anyone else of course): If you follow this link
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
and go to the replies part of the thread you will find a description of a very slow reduction plan for pred - slow in the sense that each step is small and smoothed over several weeks.
This has been worked out to reduce the steroid withdrawal problems you describe and is about to be evaluated in a clinical study in the form of vasculitis that Constance and I have which leads to symptoms off arthrtitis/rheumatism and for which long term pred is the only option for management. Nothing else works as effectively and if we go on to develop giant cell arteritis only pred is the sure way of avoiding loss of vision if it affects the blood supply to the optic nerve. No side effect of pred is as bad as that. So - we are on long term pred, the main option is stop the pred and end up immobile and in great pain, just like RA except there is no joint damage so the DMARDs aren't necessary.
There is little evidence that using methotrexate works reliably to reduce pred dose - in some people it changes the way your body processes pred and you get a better effect for the same dose. As you are finding it doesn't really help the steroid withdrawal problem, especially if you are trying to reduce by 1mg at a time at such low doses - 33%, 50% reductions. The recommendations for less uncomfortable reductions is not more than 10% at a time. At these low doses that is obviously very difficult since by cutting the tablets you can get 1/2mg (in the UK at least). By using this reduction plan you have one day at a time and then you are back to the old dose you were comfortable at for a few days - by the 3rd or 4th day your body is getting used to what you are doing and the steroid withdrawal problem gets less.
If I were told I needed to stick at 2mg for life I'd be ecstatic and take it and run! Not all the problems are to do with inflammation - as you say, some are to do with the adrenal glands not being back to full production - and the way to deal with that is a low dose of pred as replacement therapy for life. Just like having insulin injections for diabetes or thyroxine for hypothyroidism. Nothing to be feared at all. But using the very slow reduction I describe has allowed many people to reduce their pred dose with little discomfort AND their adrenal glands have almost all managed to keep up and get back to normal. We also recommend that a synacthen test be done at about 5mg (plus or minus a bit) to see if the system is capable of recovery - in some people the adrenal glands are working less efficiently because of age and that is a perfectly normal part of aging which may be there anyway.
Hee Hee! "Pred is not addictive but your body becomes dependent on it". I can't really get my head round that one. 😃😏
Addiction is something different technically. Dependency is when your body requires a substance for normal physiological processes and you will become ill without it. Effectively, pred replaces cortisol in that sense and as you remove the pred your body must produce a bit more cortisol to replace it. You can't go cold turkey on pred - it isn't only unpleasant, it could be life-threatening. Going cold turkey on addictive substances you have abused for pleasure is unlikely to result in life-threatening collapse but it isn't something to be undertaken lightly with any substance.
I have been on predisolone since July 2014 when I was diagnosed with RA.firstly with hydroxychloquorine and methotrexate.this was subsequently stopped as was sulfasazine.still taking the first two plus just started Enbril.I don't like the Pred. it has given me Cushing's syndrome - can't fasten any shirts at the neck. MARTIN
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.