Higher dose Pred then reduce or methotrexate
Posted , 6 users are following.
Hi
I have been down at 10mg since the end of January and have not felt as good. I saw the registrar at the hospital today and he agreed I should go up to 12.5 mg for a month and the reduce to 11.5mg, then 1mg a month.
He said if I have problems reducing again then try methotrexate. He was horrified by the Bristol protocol and the idea of 10mg for a year. He said that could cause necrosis of the femur.
My bloods were within normal range now. 26.7 before I started then down to 13 when I was in diclofenac three times a day ( with the side effects of tummy pain and diahorrea) then 0.6 when I started at 15mg of pred, up to 0.7 on 12.5mg and 2.1 on 10mg. I had no pain after a week on 15 and then in 12.5, but since I have been on 10mg I am having hip pain, difficulty walking up stairs, getting dressed and sleeping. Reg did not think my CRP moving from 0.7 to 2.1 was significant!
I am resting as much as poss and only working part time.
Any ideas?
Thanks
Jane
1 like, 13 replies
pat38625 jane0118
Posted
tina-uk_cwall jane0118
Posted
also, it may be a steriod sparing drug but there us no evidence that taking this drug gets you off of preds any quicker.
would you tell me how long you were on 15mgs then how long you were on 12.5mgs before you reduced further still to 10mgs in January?
Regards, christina
jane0118 tina-uk_cwall
Posted
I was on 15mg for 6 weeks then 12.5mg for another 6 weeks before I reduced to 10mg. There are side effects with both steriods and mtx but there is no point in taking either if you still have the pain and inflammation!
My secretary took me up to the new IT department, up a long flight of stairs - I thought he was asking me to climb Everest. I am 50 and went down with PMR is July but did not get diagnosed until mid October. I requested an urgent appoint as I met the criteria and got it. 6 months is scandalous contact your local Healthwatch.
tina-uk_cwall jane0118
Posted
Then when you get down to 10mg again only reduce by .5 thereafter and not 1mgs. 1mgs can be far to large a drop at that level. I reduce by .5 and stay on the new dose for 6 weeks. Eileen has created a reduction plan that equates to .5 drop and again we are in the new dose for approx 6 weeks. That way you don't have to cut the preds in half.
Yes you're quite right there is no point being on any drug if you're not getting any of the benefits but still possibly experiencing some of the side effects.
like you I was in my early 50s when I was diagnosed with PMR. My GP said that she had no idea what could be wrong with me but when I saw a rheumatologist he almost immediately diagnosed me. All the best, Christina
EileenH jane0118
Posted
You obviously have read some of the stuff - have you seen my "dead slow and nearly stop" reductions scheme? It is posts 4 and 5 of this thread:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
This concept that methotrexate is the answer is also rubbish - even the advocates of it a few years ago are now admitting it doesn't make a significant difference overall. Often people are able to reduce initially but then have a flare and end up back at a higher dose. Everyone is different in the amount of pred they require to manage the symptoms. You are still working - albeit it "only part time". Many of us don't work at all - and although I did work in the earlier days of PMR I was freelance, I couldn't have managed "going out to work" a lot of the time and would have needed a higher dose.I never got below 9mg until I used the very slow reduction. This time I reduced steadily but very slowly and have got much lower.
Will your GP cooperate with you in reducing according to the Bristol recommendations? You don't NEED a hospital consultant to manage PMR, you need a doctor who will work with you to find the optimum for you. You are unlikely to see that registrar again - he'll have moved on (I hope, but pity help the poor patients). If you show your GP the Bristol paper and the Mackie and Mallen review you will find via the final link in that link I gave you and if he is happy then stick with him.
If you get the current level of inflammation under control and then try reducing VERY slowly then mtx may never be needed.
Where do you live? Maybe there is a particularly good PMR person handy.
jane0118 EileenH
Posted
Thanks for the reply. We did look for the Bristol article but could not find it when the registrar googled it.
The consultant put me on Alendronic acid but I read the stuff on this thread and requested a DEXA which showed a 2+ reading so I was in the green zone so stopped that one. I am not going to crumble anytime soon. I walk everyday and am normal weight.
The GP is clueless, he did not even want to do any monitoring blood tests, and has not read the article even though I asked him to. I saw him three weeks ago and said I was not so good in 10 and he told me to reduce! My hip pain is worse this morning. I took co codamol last night to try to sleep but could not, then upped my pred to 12.5 mg this morning.
The thing is, the pain I am having now is my left hip joint, whereas before it was my thighs, with pain in a line down my legs and it was symmetrical - this is not. I did ask was this still PMR or really RA, but dr thought it was still PMR as I was dramatically better after one dose of pred.
tina-uk_cwall jane0118
Posted
EileenH jane0118
Posted
I do wish I could put the link up for the Quick and Kirwan paper without having to go round the houses, I'd use it more I'm sure!
Sounds like a cue for a new GP...
jane0118 EileenH
Posted
Thanks for the information. I am still having the left hip pain inspite of the increased pred, so decided to call the advice line at the Rheumatology department. The specialist rang me back and said "it might be wear and tear so to have an xray", which sounds good. I also asked if I could have physio, and he agreed. I want to try that before I go for injections in my hips. I have a physio who has done Bowen who is a short bus ride away..
EileenH jane0118
Posted
ptolemy jane0118
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vawils jane0118
Posted
She also suggested I try methotrexate now to help the reduction and reduce inflammation. I told her i would rather not based on the limited effectiveness and side effects i have heard about with methotrexate. She downplayed that and called it very safe but I had taken Meloxicam (mobic) last year for a couple months which she knows and I had terrible additional side effects and not apparent benefits so am now very reluctant to try anything else right now and want to just try a slower reduction.
She agreed to MY plan but said we may have to consider again in June dependent on how well i do on reduction. She suggested tramadol or celbrex as an alternative to methotrexate and seems to think that i will need something else to help but i am not ready to agree and take any additional drugs that may give bad side effects and no real benefits.
Anyway thought I would share my experience and thoughts and wish you the best.
Stu
tina-uk_cwall vawils
Posted
i always am really annoyed to hear of drs and specialists that reduce their patients so fast then to hear that the patients have not only had to up the dose of preds again but usually second time round find it harder to rid themselves of pain.
I believe it's very simple, 15for 6 weeks, 12.5 for 6 weeks then 10 for anything up to a year. I was on 10 for 6 months. And for patients who find the 2.5 drop of preds just too much to reduce by only 1mg. Yes it may take longer but does it? No, because those patients that reduce too quickly often find they have a flare and then have to up the preds, so there is no difference.
I got down as far as 9mgs last year and attempted a 1mgs drop down to 8 and suffered a flare. Therefore I advise all patients to only reduce by .5 once they have reached 10mgs. I reduce by .5 and stay on that dose for 6 weeks. Eileen's slower, smaller reduction method does work.
drs need to realise that the dose of pred has to fit whatever level of inflamation there is at that time and not forcing the inflamation to fit the dose. Sorry stu, but I look at it like this if you are a size 12 dress size if you force yourself into a size 10 or smaller then the seams are gonna start bursting! I am no Dr but I say stay on 10 until you feel as good as you did the first time in 10, hopefully 6weeks then reduce by .5 and stay on each dose for 6 weeks. See Eileen's reduction plan. I use a variant of this plan and touch wood am doing ok.
tramadol, will not help at all as it is not an anti inflammatory drug, and I say if you don't want mtx, which I don't stand your ground. No Dr can force us to take any drug if we don't want it. You have only been on this journey since April last year, that's not even a year! Yet your Dr wanted you to already be down to 7.5? No wonder you had a flare. I say slowly, slowly catchy monkey! All the best, Christina