I've posted before so will do the very potted history . . . .
It's now two years since first diagnosed with Polymyalgia Rheumatica and the first Prednisolone which was like a miracle and I guess still would be if I 'overdosed'. Currently well stuck at 10mg there seems no way forward. I've tried the slow tapper but the first day I drop there is a reaction so I had decided to just take a quiet view and stick at 10mg until the new year and then try the slow taper again.
I'm not uncomfortable at this level and it does not worry me to stay at this level.
But, the Hospital called today as there was a cancelation and I was overdue to see the Consultant. Chatted over my position and he expressed concern that I had become steroid dependant, something that can happen after two years. Whilst the dependency was not something that concerned him in itself it did however at the 10mg level. Get to 5mg 'ish and that would be more acceptable.
So he wants me to go on Methotrexate, starting with a three month course running alongside the 10mg of Prednisolone. This is to be closely monitored by a 'specialist' under one if the consultants (can't remember for what) and will mean blood test one or twice a week. Then after another Rhumi appointment in three months a decision will be made to start lowering the Prednisolone.
The whole thing seems horrific, especially as I have just noticed in an article on this site the following 'There is little evidence for the efficacy of steroid-sparing agents - eg, methotrexate or anti-tumour necrosis factor agents. Methotrexate is the most commonly used corticosteroid sparing agent.'
Any comments and thoughts will be appreciated.
Hi David I have PMR and Psoriatic Arthritis and take prednisalone and I inject every week 25mg of Methertrexate, as long as you have the blood tests as required for the first months and all is ok, you to monthly bloods and I am now every 3 months, and have been for years and years........
Doing tins keeps my PMR and Psoriatic Arthritis under some form of control, and when I get very back flare ups we increase the prednisalone , most of the time I feel ok nut some side effects......they are manageable, the blood tests show if all is ok.....
Good luck cat lady 66
Thank you, I git the impression it was pills not injection, is there both.
Sorry for the mistakes, my IPad is very sensitive this evening for some reason, or may be it's the typist Ha haa. Cat Lady
Oh sorry yes, I took tablets for about 12 years, but now inject but you don't have too do this tablets are fine .....keep in touch ....and let me know how you get on....
Hi.
I had to respond, as I am in a very similar position to yourself. At my last monthly gp check up, my doctor referred me to a rheumatologist as she is concerned that I cant get my pred dose below 13.5mg She said the rheumatologist would be able to prescribe me Methotrexate to allow me to reduce my steroid intake. Like you, I have heard mixed reviews about this drug and since I already suffer horrible side effects from the pred, I am somewhat concerned that there seems to be no concerted opinion as to whether it is effective! I shall be reading your responses with great interest. Good luck and please keep us up to date with your progress. Debbie
Thanks, so were you able to lower your Prednisolone as a result of taking the Methotrexate and may I ask what you are on now . . .
Hi Debbie, fortunately I have a brilliant, cooperative doctor who I am going to see and discuss it with in full. We agree IRS my body and my discussion., but I'm not stupid about that just carefull.
I was recently offered the 'shingles' jab but after chats on this forum and exploring the drug companies own comments I opted out . . . after all it is a live vaccine! My point is that the surgery was all Ozk fir me to gave it despite my misgivings but I just felt not this time.
Guess I feel the same about the Methotrexate no point in doing it if I can reduce the Prednisolone and then don't want to sustitute a new drug to add to my list.
What a minefield . . . .
I now take 25 mg of Methertrexate each week and a maintainence dose of 5 mg Prednisalone per day I am going to see my consultant at the end of September and ask to slowly stop the preds and see what happens.........I hope you will be ok...keep in touch....Good Luck Please feel free to aske any questions you may have, I will try and help by telling you how I,feel and what I did, but remember all meds don't agree with all people....... There are,lots of combinations and lots of meds that can help you.
I know exactly whatyou mean about the drug list! I have been suffering awful acid reflux as a result of the pred and now have to take Omeprazole every night to keep it at bay. I am now getting attacks of vertigo, nausea and a return of swollen ankles (also originally from the pred,for which I have been prescribed diuretics that had been working). Guess what? All side effects of Omeprazole! I am now wondering if the doctor will want to prescribe more tablets to control the side effects of the tablets she has given me to control the original side effects! Where does it end? You have to laugh (albeit somewhat manically)!
Now I like omeprazole . . . It's my friend. Acid reflux in the night started long before Polymyalgia Rheumatica and Omeprazole was my saviour, once I found out what foods caused it. I take one in the morning and one in the evening just to lower acid and line my stomach all with no side effects that I know about. For me it comes under the old saying "you are what you eat" and some foods after 4pm are strictly out.
I have had the most awful swollen ankles and also my feet look like something out of a horror film, someone one on this forum recommended Manual Lymphatic Drainage and I have found it fantastic. The downside is you have to pay for it!
I would be very interested in which foods you are referring to. I have been trying without success to find my acid reflux trigger. The only thing i noted before my last attack (Monday just gone) was I had not eaten as much fruit and veg for the few days preceeding. I have already drastically reduced my intake of white flour products and processed, pre-packaged food to try (unsuccessfully so far) to combat the steroid weight gain, especially neck and midriff areas. Yes Omeprazole is a friend but like the lovely rose, it has thorns lol!
I thought this was the drug for RA? I have had no diagnosis yet, so have been looking into both PMR and RA as my symptoms seem to be pointing to one of these and my orthopaedic surgeon seems to think its one of these too, going to see rheumatologist on Friday and until then gp will not prescribe anything other than tramadol and co-codamol and liquid morphine, unfortunately none of these have much of an effect if any and I am suffering dreadful pain in hips, knees, shoulders, fingers, wrists, elbows and feet oh and occasionally my neck, just realised I think that just about covers my whole body. It varies in some places and can be manageable but always, every day, every night in my hips, knees and shoulders. Just hope the rheumatologist can get to the bottom of it.
I have been reducing 1mg per month from 10 to 5 over eight months,at
first I would yoyo back up when I felt discomfort but now I use Regular
Tylenol once a day which seems to get me through the achy bit and with
rest and gentle exercise I'm looking forward to going down to 4mg in a
month. The very best of luck.
I've had PMR for quite some time now when I started I had fibromyalgia and polymyalgia and Dr. told me do what I went on the gluten-free and the fibromyalgia is gone now but I still have the polymyalgia I take 5 mg of prednisone right now and it really helps once Day I was on methotrexate got it didn't help me I wound up with a problem so I was put on another truck but I seem to doesn't seem to make much of a difference to me I still feel the same pretty much the prednisones only thing that really helped me
Debbie - if you are having severe side effects from the omeprazole ask your GP to change the type of anti-acid medication. There are other PPIs (omeprazole is a PPI) which may disagree with you less or you can use good old-fashioned ranatidine (Zantac) which is a different substance group. Gastroenterologists have expressed surprise at the GP fixation with PPIs when ranatidine would work as well with fewer side effects.
There is some thought that the patients for whom methotrexate works have some degree of RA alongside their PMR - the symptoms we call PMR are not the illness, they are symptoms of something else going on and other inflammatory arthritises can cause it which don't respond to pred as well. That is why the response to 15-20mg pred is a useful clue - if the response isn't dramatic with a 70% improvement in symptoms within a few days then another diagnosis should be considered.
I know several people who were put on methotrexate (MTX) and it appeared to work for some time, allowing the pred dose to be reduced to a relatively low level but then the PMR flared and they were back to 10mg or more overnight.
The rheumy has a point about the "steroid dependency" and that is why the very slow reduction schemes help. I assume you mean you "had a reaction" on the single day you reduced the dose with my scheme. I cannot cut my pred tablets, I have to drop a full 1mg each time, and I find the first 3 or 4 days I take the new lower dose I feel strange. It isn't typical PMR symptoms but I don't feel well. But I have realised that after that I start to feel BETTER the day of the low dose and less good on the other days. I believe some people are incredibly sensitive to the change in dose - up or down - and the smaller the drop each time the easier it becomes.
It is your decision with regard to the MTX - but if you are taking omeprazole you will need to switch to a different stomach protection medication. There is an interaction between PPIs and MTX and whilst it is more common at higher doses it has been noted at doses below 15mg too.
By the way, I was at above 10mg for nearly 4 years. Every time I got to 9mg I flared and for a short time was on 20mg of medrol - for some reason it didn't work for me and I needed that sort of dose to function at all. As soon as I switched to a different form of steroid I went straight back to 15mg and have reduced steadily since. But my GP, who used to work in rheumatology, has been very concerned at what she sees as my fast reductions! She was perfectly happy with me being at 10mg. They take it all in very much more relaxed manner here in northern Italy - you get pred and pred alone. No alendronic acid, no PPI, just calcium and vit D unless it turns out you need them. Over 3 1/2 years my bone density had remained pretty much the same, well within acceptable limits, it can't be compared exactly as they were done on different machines.
I imagine the mTX will be monitored by a specialist in liver stuff - that is the most common problem with MTX, hence the instructions to limit alcohol intake.
Just interested to know if you Omeprezole takers ever tried good old Gaviscon tablets which can be bought over the counter and have no nasty side effects for acid reflux?
I am a PMR sufferer of 18months.
DJ
The use of omeprazole with pred is also to prevent the overproduction of acid and damage IN the stomach as it is felt the pred can irritate the lining of the stomach and cause damage there - it is less because of reflux as such. I mentioned rantatidine/Zantac earlier, that is also available over the counter. But of course, if you are on the usual variety of pills for PMR you should have bought a pre-payment certificate so the PPI/H2 drugs are covered by that!
I have never taken anything - and I know a lot of people who don't either. We all used yoghurt, often eaten at the same time we took our pred, and it has worked well for all of us.