Advice needed please

Bones, joints and muscles
1

Hi everyone, its been so long since I have posted that I'm sure you dont remember me. I have, however been following all the posts in the last year or so.

I've had a few ups and downs, but I've managed to get down ( at last) to 3mgs pred. My Forsteo injections finished this month (2 years) and I'm still taking the Calci-chew. My rheumy has prescribed Fosamax for the forseeable future and also told me I now have Bursitis in my right hip!! :x This on top of everything else!!

So now to add to pernicious anemia,underactive thyroid, osteoperosis,anemia,ibs and pmr, i now have to try to cope with bursitis!! Sorry, having quite a bad day..

I just want to ask a question and I hope you lovely ladies and gents out there can give me some advice. My rheumy has suggested that,as my esr levels seem to be yo-yo ing and I have to go up and down with the amount of pred I take, I might consider taking mtx.

Does anyone have any advice? Has anyone had any bad experiences?

The reason I ask is that my brother (he has psoriatic arthritis) was put on mtx and thought he was going to die he felt so bad on it and a friend of his who was also put on it thought it was the best thing since sliced bread!!!

Does the effect depend on the person taking it or is it a combination of different drugs being taken at the same time affect the outcome?

Sorry to be on such a downer tonight, havnt felt this bad for a while. Think I'll have a little (well littleish) medicinal brandy and go to bed. :lol:

Night,Night all,Pat. :zzz:

2

Hallo NannyPat, I have no personal experience of methotextrate ) How on earth is one supposed to pronounce it, the accents are all wrong, probably named by some illiterate scientist! ( sorry, Eileen, not personal )

I have two neighbours who suffer from RA and are on the drug, one recently diagnosed, the other more than ten years but not sure when she started mxt. She took time to adjust and felt rotten when she took it at first but later said at least it let her get up in the morning, the other seems to find it fine and was, for a time taking Prednisolone as well.

Several people on here don't seem to get much joy from their blood tests but, as far as I remember have not been taken off Pred. just have to be guided by how they feel but it must make it a bit more difficult for their doctors especially the sort that don't approve of patients knowing anything about their own bodies. I think some think we can't read and as for the internet, they wish it had never been invented.

If you are down to 3mgs. I wonder why your doctor wants to change your treatment. How high do you have to go during the glitches? How frequently do you yo-yo?

Sorry today is not a good one. ( or was that last night? ). Anyway, hope you feel better very soon.I just havePMR and a bit of OA and firnd that quite enough to cope with so have a lot of sympathy for those with multiple problems.

3

Hello Nannypat and, of course, we remember you - have you managed to put your socks on at the bottom of the stairs without falling over yet?! :wink:

I find it a little difficult to understand why your GP is suggesting Methotrexate when you have, apparently successfully, managed to reduce to 3mgs? You mention that your ESR fluctuates but it can do for anyone particularly if they have some virus or infectionlurking. I wonder how high your ESR goes and also whether you have a CRP blood test. I am one of the people whose blood tests always corresponded to how I felt - if my pain levels increased then inflammation markers also increased.

There are one or two others who post here who are taking MTX and I'm sure they will be along soon with their experience - I know from reading their posts that it is difficult to adapt to the side effects at first but it seems that this passes after several weeks. BUT, they are generally on a much higher dose than 3mgs of Pred and struggling to reduce when MTX is suggested.

Do hope that \"little medicinal brandy\" helped last night - MrsK's favourite remedy - and you feel better in yourself today. :ok:

MrsO

4

Hello

Im sure there is a story on the North East website about this and someone on our forum has started on it also but dont remember who !!Steroid brain ! I think most people feel pretty awful to start with on it and then improve

I only know two people on it and neither are on it for PMR so its possibly a different doesage

Keep researching before you take another drug !!

Best wishes

Mrs G

5

Hi Nannypat, sorry to see that you have yet more problems.

I'm one of those on Methotrexate, I have been on it for 20 months and I am currently on 20mg a week. It was suggested I take alongside the steroids to start with as I have struggled badly in the past to reduce the Pred.

The initial side effects can be quite bad, but having said that I know of several people who had no side effects whatsoever. The main problem encountered is overwhelming fatigue. I found this wore off after a few weeks and now I no longer even know I am taking it. It did allow me to reduce the Pred to 2.5 daily - the lowest I have ever been - so it does work for me, but is obviously an individual thing; I don't think any meds make any difference to the result, just how it affects any one person.

Even so, like Mrs. O, I do wonder why your Rheumy wants to put you on it now - a daily dose of steroids of 3mg is pretty well negligible. I was on 10mg daily when I first started Metho. I'm certain that if I had reached as low a dose as you my Rheumy would not have suggested it.

In my case I am not sure what the next Rheumy appointment will bring. I had a flare-up of the GCA earlier this year, had to go back to 40mg Pred and am currently on 13.5. I see him next week, so will find out then if he wants me to continue with it.

Hope this helps.

Nefret

6

Hello ladies,thanks for your input. I dont really know why my rheumy suggested mtx(i cant spell the proper word let alone pronounce it!).

My esr levels have been going up and down,but only by enough to cause some discomfort. When I was first diagnosed with pmr (3 years ago next week),my esr level was only 46. Thats not very high compared to some on this forum I know, but it was enough to completely knock me for six. Usually the levels havnt gone down much further than 25. Over the three months between each blood test, I can usually tell if the levels are going to be higher. As for the drop in steroids, I've gotten down to 5 mgs day a couple of times in the last 2 years, only to go back to 10 and have to slowly start dropping again. I even got down to 2mgs a day 3 months ago!! Then the esr went up again. this time my gp suggested that instead of going to 5 mgs a day I should try 3 instead just to see if that would make any difference. I must say that I wasnt looking forward to going raising the pred again.

I was just thinking last night while I was having my (medicinal..I wont admit to anything else) brandy that maybe the rheumy meant the mtx for my osteoporosis (it was a pretty bad t score at -5.3 in my spine). trouble is you wait so long in a waiting room to see these people and have a pile of questions to ask them,then it all goes out the window when you do get to see then. :roll:

I think every time that I must write down what I want to ask,and I do ,but when the time comes I forget the flipping thing!!!Defo steroid brain!! :lol:

Hi Mrs O..last time I tried to put socks on at the bottom of the stairs I nearly did myself an injury!! But me and stairs dont seem to mix well..I have been known to fall UP them on occasion. Last time I did that I ended up in casualty with a broken wrist!! :x

I wont be seeing my rheumy for a couple of months, but I will be seeing my gp. I'll ask what he thinks too. In the meantime I will be doing as much research as poss and try to decide what I'll have to do.

Big thanks and big hugs, Pat

7

Me - tho - trex - eight. Say the bits and then put them together!

Why?????? I'm asking this so often now. If you are fine at 5mg and not fine at 2.5mg you don't really need to yoyo up to 10. Stick at 5mg for several months and don't try to go any further down. Then maybe try a 1/2mg drop at a time with a month or two between attempts. But you maybe need to remain on the 5mg for a long time. Maybe forever. But at that level it shouldn't be doing too much with the osteoporosis.

An ESR of 25 at 60 plus is fine.

Why back on fosamax after 2 years of Forsteo? Thought it was meant to last for some time?

MTX - yes, it depends on the person, some people have very few bad effects, others really suffer. Also depends on the dose level - more mtx, more side-effects. My rheumy in Italy doesn't agree with mtx for PMR - says there are enough studies that show it doesn't work. I think - my personal opinion - that the people it works for are the ones with possibly late onset RA or another arthritis that is difficult to distinguish from PMR. But many people find they have a day or two a week that they have their mtx hangover - the rest of the week is OK. You have to decide whether the benefit for you outweighs the bad bit. It must be all about quality of life.

Eileen

8

Hi Pat,

I started on Methotrexate at the end of May this year, but I also have Late onset Rheumatoid Arthritis, and I could not get below 10mgs of steroids , so it was somewhat different to your case.

The only real problem that I have had with the MTX is extreme fatigue the day after I take it, but the nausea I had at the start has now gone, thank goodness.

To the best of my knowledge, the MTX will not do anything to improve osteoporosis...I take Fosavance for it and calcichew tablets.

Have another chat to your Gp and see what they think, but it would seem to me that the MTX is not really indicated at the level of pred you are on.

Best wishes,

Pauline.

9

Hello again Pat

Well, that's not a bad ESR for our age group! :wink: My ESR went down very low on the higher dose steroids but crept up a bit again once I reached the low doses - I often wonder whether in some cases the higher doses can lower the ESR to an artificial level and once we reach the lower doses our ESR increases to what might be normal for our bodies? I think it's best to go by how you are feeling, ie how much pain and stiffness you are suffering if, as you say, you have a yo-yoing ESR.

My aunt has severe enough osteoporosis that she suffered a hairline fracture of her spine last year. She is now 6 months into the daily Forteo injections and doing really well - back to the gym and swimming at the age of almost 86! She had been taking Fosamax for years which the consultant said had been doing her no good at all so I know she wont ever go back on that at the end of the Forteo. I understand that the reason for taking up another bone protection med at the end of the 2 years on Forteo is because the benefits will only last for a year or so. I think my aunt will just up her calcium and Vit D intake but will obviously take best advice from her consultant.

I have tripped going up the stairs before now, so you're not the only one by far - it isn't after taking the \"medicinal\" is it?!!

MrsO

10

:lol: Hi Mrs O, I couldnt help laughing at your last comment..I had actually just finished work when I tripped on the stairs before going home. The 11th of December 2 years ago!! Didnt get a chance to have anything 'medicinal'!!!

You might ask how I remember the exact date...My youngest grandson Tom was born the day before! :D So there was me sitting in A & E in Waterford Regional, and my daughter in maternity upstairs !! :roll:

Seriously though,I had only been injecting myself with Forsteo for about 5 months when that happened. The docs said that if I had been using it longer, I might not have broken the wrist at all. It was a straight snap thank goodness, I was able to work with the cast on (I work in a Dry Cleaners). Its a family business, and my brother put me on light duties(which he also did when I was diagnosed with PMR).

I've just picked up my prescription for Fosavance today. My doctors secretary told me that the script the rheumy faxed to them wasnt the usual one that they(my doctor) prescribe, it says 70mg /5600IU. It seems (according to my chemist) that the 5600IU is the amount of calcium/vit D in the tab. I suppose that only being 55, I'm probably going to be taking Fosavance for a long time. I'm also taking the Calci-chew.

I'm going to see my own doctor on 2nd August for bloods etc and my B12 shot, I think I'll have a little chat with him about MTX. I dont really like the idea of taking it. :?

Bye for now, Pat

11

Hi Nannypat,

What part of Wexford do you hail from?? I was born in Enniscorthy and my Mum was from Taghmon,so I am a \"Fellow yellow Belly\"......to those of you in the Uk, all our counties have nicknames that have come from goodness only knows where :roll:

We seem to have a lot in common...I am just 3 years your junior, but also have pernicious anaemia, osteoporosis and PMR.

I did suffer badly from IBS since 2007, but the high doses of steroids, combined with the Protium I take to protect my stomach from them seem to have helped to control it a lot. I suffer from a wheat and egg intolerance so avoid them in my diet and thankfully I have not had too many problems with my tum since the PMR kicked in....I used to have to eat Immodium plus by the packet full :oops:

I was diagnosed with PMR in April 2010, but have now also developed late onset rheumatoid athritis and that is why I have been put on the methotrexate. It is a pain (literally) but what can one do but take the pills and hope for an improvement somewhere down the line :wink:

I used to be very active and played a lot of golf....sadly not able to do much of anything at present without suffering complete exhaustion the next day, but compared to some folk, life is not so bad smile

This forum has been brilliant for me.....at the start I felt very hopeless and alone...then i realized how many of us were in the same boat, and the support has been a tremendous boost.

No-one else truly understands how frustrating this awful illness is and if another person tells me how well I look I may not be responsible for my actions :roll: :wink: :lol: .

YES.....I look well...I spent over an hour blow-drying my hair and putting on make-up before I met you and am utterly knackered after the effort...but thanks :D

That's my rant over for tonight !!!!!

Hope everyone is well or reasonably so.

Love to all.

Pauline.

12

Hi Pauline..We could be twins!!( except for the fact that I live in New Ross and I'm 3 Years older than you!!) :lol:

Until PMR was diagnosed 3 years ago, I had never heard of it. Now it seems to be coming out of the woodwork so to speak. I've met couple of people here in my hometown who have also been diagnosed. They are both a bit older than me, but seem to be managing ok at the moment. I try to keep in contact because its nice to know that you are not the only one going through this. You are absolutely right about people saying how well you look, I've lost the hampster face and two stones since I started dropping the pred, but I feel like like death!!! I also think that stress might have something to do with it. Nearly lost my Dad last year, and its hard not to worry about him.

So nice to meet up with you here Pauline,from one yella belly to another(although I'm an adopted one..I was born in Trim and lived in North London till I was 14, then moved \"home\" with my mum and dad. I've been here ever since!!!)

Bye for now, Pat

13

Hi Nannypat,

My rheumy wanted me to try mtx-- supposedly to help reduce prednisone--I was at 10 mg. This was last fall. I was totally opposed to taking the stuff after reading the side effects, but then an old family friend who has RA told me she had been taking it for 20 years or so and \"it gave her her life back\". So I thought I would give it a try.

It didn't give me any trouble as far as side effects, except that I did get the mouth sores, even though I took the required Folic Acid. I had to increase the Folic Acid to the maximum a person can take in order to not get the mouth sores. However, the mtx did not make any difference in my PMR symptoms, nor was I able to taper off prednisone at all. So after about 3 months I discontinued it.

I think you are right in saying that the reaction to mtx varies from person to person. Everyone's body is different. I don't remember getting that \"hangover\" feeling that everyone is talking about.

I'm pretty sure it isn't prescribed to help osteoporosis, so that can't be why your doc prescribed it for you.

I hope you are doing better now. I'm sorry you are having so many issues. Dealing with PMR is hard enough!

Take care,

freesia

14

Hi Nannypat,

I agree with what's been said so far... why start taking MTX when you're already down to 3mg per day?? You're already on a dose less than the body makes normally of cortisol.

My Rheumy wants me to try MTX as I seem to be stuck on 9 - 10 mg/day. After doing quite a bit of research, I found a 5 year double-blind study of 50 PMR patients (sponsored by the NIH [National Institute of Health]. (Double-blind means neither the patients nor the Drs know who's taking what.) 25 PMR patients took MTX along with their Pred... the other 25 took a placebo along with their Pred. After 5 years they concluded that 8% of the patients taking MTX along with their Pred were able to get to a lower Pred dose.

This tells me it's not worth trying for a chance that I might be one of the 8%! There are more side-effects... many patients feel like cr@p for a day or so afterward, and due to drug interactions, you can't take aspirin, caffeine, PPI drug (for stomach upset), or alcohol. My GP said he's never heard of anyone being treated with MTX for PMR, but of course it works well for RA patients. My daughter-in-law is a pharmacist (I think you call them chemists in the UK). She told me it isn't worth it just on a chance to get on a lower dose of Pred.

I'd share a link to that 5-year study, but of course this forum doesn't like hyper-links. :roll:

But if you Google for \"Methotrexate 5yr study for PMR\", you should find that study as the 2nd choice. The first choice happens to be my post on another forum about this very question.

I do understand that some people with PMR have had success with MTX in helping them lower their Pred dosage. That's great, but don't think it's for me.

Good luck in your decision Pat.

15

In case you couldn't find the 5-yr study, here's a copy of the abstract and ending results provided by \"US National Library of Medicine National Institutes of Health\":

Long-term follow-up of Polymyalgia Rheumatica patients treated with Methotrexate and steroids.

Cimmino MA, Salvarani C, Macchioni P, Gerli R, Bartoloni Bocci E, Montecucco C, Caporali R; Systemic Vasculitis Study Group of the Italian Society for Rheumatology.

Source

Clinica Reumatologica, Dipartimento di Medicina Interna, Università di Genova, Italy.

Abstract

OBJECTIVE:

A series of patients with polymyalgia rheumatica (PMR) who received the steroid-sparing combination therapy, prednisone and methotrexate (MTX), underwent a long-term follow-up study at five years to investigate possible reductions of steroid-related side effects. Additional end-points were the number of patients still in need of steroid treatment, the cumulative steroid dose, and the number of flare-ups of PMR.

PATIENTS AND METHODS:

Fifty-seven PMR patients who were enrolled in a double-blind placebo-controlled randomised trial on the efficacy of MTX added to standard steroid treatment were reviewed after 5 years. Information was collected on the patients' previous health conditions or causes of death through a standardized questionnaire by direct visit, chart review, or interviews with relatives.

RESULTS:

After 6 years from initiation of therapy, MTX-treated patients had lower ESR (17.1+/-9.7 mm/h vs. 26.8+/-22.9 mm/h, p=0.08) and CRP (2.7+/-2.3 mg/L vs. 10.2+/-16.4 mg/L, p=0.04). 31% MTX-treated patients were still on steroids in comparison with 39.3% controls (difference of 8%). The mean cumulative dosage of prednisone in MTX-treated patients was 2.6+/-3.8 g in comparison with 3.2+/-4.1 g for controls (p=0.6). PMR flare-ups were seen in 30.8% of MTX-treated patients and in 44.4% of controls (p=0.39). During the follow-up, 58 and 55 side effects were observed in MTX-treated patients and in controls, respectively.

CONCLUSIONS:

MTX-treated patients showed slightly less residual inflammation than controls, with the same incidence of steroid-related side effects. PMR is not a benign condition, as often reported, since one third of patients need steroid treatment for more than 6 years.

16

Not another one - Rick is absolutely spot on - there is no point at all using mtx to reduce from 3mg! This happened to another lady whose reduction had gone absolutely straight-forwardly and suddenly they wanted to add in mtx to get down from about 5mg. It is accepted that there are some patients who need to be on steroids for a very long time and from 5mg down it is a case of VERY slow, half a mg at a time and stay on the new dose for a couple of months at least before trying another drop.

Look at the pmr gca northeast support site for Ragnar's story about very slow reductions at lower doses and - and others will be along to tell their versions too. MTX is meant to be used for patients who can't get down from higher doses - above 10mg or have repeated flares. It doesn't mean that by taking mtx you can stop steroids altogether - often it means you achieve 5mg instead of 10mg. A dose of 3mg is regarded as a dose you can take for a very long time with few risks. It's the high doses that pose the problems.

Your rheumy has probably just had a visit from the drug rep and has read about some new studies that are just starting. After 3 years and being on 3mg - don't rock the boat, carry on as you are unless your rheumy can come up with a very good reason. Pauline has different problems, at a much higher dose of pred and has LORA - mtx can work in rheumatoid arthritis, it's not a lot of use in straightforward PMR. MTx means much bigger lifestyle changes anyway - but if you feel that rough now you are probably not on high enough a dose of pred - you said before you felt better at 3mg than at 2.5mg. Any sensible doc would be suggesting 3.5mg and stay there for a good 6 months. It shouldn't do any damage. However - the bottom line is, you have to make the decision. I wouldn't be taking it - that I do know.

Eileen

17

Hi all,

I would love to be able to report that MTX is a great drug and has done wonders for me.....but I am now into my 11th week of taking it, supposed to be back down to 10mgs a day of pred at this stage, but my hands were so swollen and stiff this morning that I had to take a total of 20 (I know....should not over medicate...but was desperate) before I could even shower or dress.

My rheumy did warn me that it doesn't work for everyone, but I thought I might get at least some small improvement :roll: .

I am not due another appointment until the end of August, but will be phoning him on Tuesday morning ( tomorrow is a bank holiday here) for an earlier date as my knuckles are still quite swollen and I don't want to risk permanent joint damage.

I really do not see any point in continuing to take the MTX when there has been no relief after giving it a fair go,so it will probably be onto yet another drug....he suggested a weekly injection of Embrel as the next option, so will wait to see what happens :wink:

The only time I have been fully pain free in the last month was when I was temporarily back to 40mgs pred, but obvoiusly staying on that high a dose is not a long term option, so for now its back to the drawing board :roll:

Hope the rest of you are faring better.

Love,

Pauline.

18

Hi Pauline

Sorry to hear Mtx isnt working for you I am hoping it isnt suggested for me just because I know people who have taken it for other illnesses and they have had bad side effects

It does sound as if you need further investigation as you need such high doses of steroids to feel well

I had got to 2mg now up to 4mg and seem to have good and bad days Some days I feel really stiff in the mornings particuarly wrists but other days not too bad Not doing anything till I see the Dr in 2 weeks I was thinking in May when I was on 2mg I might be off of all this by the time 3 years are up in Oct but........ No chance !!

Best wishes

Mrs G

19

MrsG

I know this will sound funny, but if you were to be on anything up to 5mg per day for the rest of your life, it would not really matter.

Stay comfortable, if when you reduce and you wait five days, and the pain does not go away, you need to up it back to where you were comfortable and try again.

Have you tried Ragnar's method? The percentage drop gets higher the lower the dose.

Good Luck.

20

Hello Mrs K

Yes I had thought it might come to staying on 5mg but going to 2 mg it all seemed to be going well I was going even slower than Ragnars method !!

Each time I have a blip it seem to coincide with a throat infection so its annoying but I will be patient for a while and stay on 4mg and play it by ear

Thanks

Mrs G