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2nd opinion today. Still no diagnosis.New drugs??

Posted , 9 users are following.

Charlieschoc
Charlieschoc

Hi all. Happy new year. I have been keeping up with all your posts but haven't posted for a while myself. I almost feel a fraud here as the docs say I don't have PMR.

On the recomemmendation of this group I requested a 2nd opinion. I asked to be referred to see Professor Bowman at The QE Birmingham.

Today was my big day. Well the Prof was lovely. He listened really well, gave me a good examination and is following up with loads more blood tests.

I was also treated to xrays on my chest, hands & feet.

Now the downside (again) he went over all my blood results from the last 9 months and said that every result pointed to PMR. But bbbiiggg BUT,

he doesn't feel he can say it is as I am too young! (44) I certainly don't feel to young when I am trying to get out of bed and get moving in a morning.

I have been on pred for few months now after begging my GP. Then refusing to leave the surgery until they listened. My GP agreed to a trial. Base line bloods for ESR & CRP 6 weeks on pred at 15 and then more bloods. Results were amazing and my bloods came back almost within the normal range. Good news my GP has since said I do need steroids.

I am now at 10mg a day but I feel it could do with being higher. Today Professor Bowman said he is really worried about me taking steroids. He agreed I needed them but is concerned about long term use and my age. I got moon face very quickly on pred and Prof commented that he could see pred was already making changes to me that he didn't like.

He wants me to come off pred using the dead slow method and wants me to start another drug.... Either Methotrexate or Azathioprine. I get tp choose.

So my lovely people have you had any experience of these drugs?

Which one would you choose?

I know a name for what I have isn't of too much importance but I was hoping to get a diagnosis today. Not sure how I will get on with holiday insurance etc.. Illness with no name..won't go down to well on the forms lol..

So come on you lot give me your wisdom... What would you do??

0 likes, 18 replies

18 Replies

  • gillian_25383
    gillian_25383 Charlieschoc

    Posted

    I had to come off prednisolone.Rheumatologist put me on methotrexate tablets.Told could take up to 4months to work-it did.Had to come off tablets at 25mg/week because of side effects.Now on same dose by injection -do it yourself once taught -no problems and touch wood 6wks on no side effects.No experience of other drug
    • Charlieschoc
      Charlieschoc gillian_25383

      Posted

      Hi Gillian. Could I ask what side effects you had please? I know we won't all get the same but the read up on these drugs is a bit off putting x
  • margaret22251
    margaret22251 Charlieschoc

    Posted

    I am being weaned of pred as my rhymi said i do not have pmr, but i am having problems with pain in my temple and earaches, my own gp said i must tell them at the hospital, but i have and still they say you do not have pmr, now nearly down to 7mg a day, and in two weekds have to have a utlra scan on my bones, also had a steroid injection on the 14th December, so i can only hope they know what they are doing.
  • EileenH
    EileenH Charlieschoc

    Posted

    Just call it "non-specified inflammatory arthritis" - it'll put the price up a bit but ...

    It's all very well changing you to another drug - he obviously wants it to be a non-specified inflammatory arthritis and mtx or azathioprine should work there though they will take a few months if it is that. They won't work in PMR unless you are lucky and they do potentiate the effect of the pred (there is some evidence they do but it is mixed and disputed)  - but you still would need some pred. If they worked in PMR they would use them for everyone. They don't and that suggests to me that they accept pred is the mainstay still however much they don't like it.

    Under the circimstances you don't have a lot of choice do you? You need to sit down with the GP and discuss it very carefully. Possibly your GP will agree to continue to manage you and ditch the rheumy - which is what I did when the rheumy wouldn't accept the typical response to pred. I was at least in the "right" age group but another GP had the courage of her convictions and provided pred. The rheumatologist here is perfectly happy it is PMR so here I have no problems.

    I don't know how we get past this "you're too young" belief. When it walks like a duck, looks like a duck and quacks like a duck surely you accept there is a pretty good chance it might BE duck? Someone else was told something similar recently - "if you were older I'd say it was GCA immediately - as it is you'll have to be a mystery". She has textbook GCA symptoms that respond to pred.

    Maybe you can come to an agreement with your GP - try the mtx or aza and see if it works. If it does that is fine - if it doesn't ask the GP,  can you go back to pred with him. And the test should be whether you can successfully reduce the pred very slowly over the 6 months it is fair to try out the other drugs. Even in RA where mtx is the standard starting drug they allow 6 months to see if it will work. It may be that the same happens for you and it works - and then you will be able to reduce the pred in parallel with taking the mtx/aza.

     

  • gail2910-US-MI
    gail2910-US-MI Charlieschoc

    Posted

    Are Methotrexate or Azathioprine less risky than Prednisone? I am not sure of that. Talk about the devil and the deep blue sea.....
  • mphooey
    mphooey Charlieschoc

    Posted

    I currently take methotrexate as well as 5 mg. pred. I do have PMR. Jury is still out on whether methotrexate is working. Still have aches & pains, mostly in AM and after being sedentary.

    Never heard of the other one. Good luck!

  • LayneTX
    LayneTX Charlieschoc

    Posted

    I think my Rheumy is experimenting with me unfortuntaltely, she has me on Plaquinel and Sulfasalazine, both are DMARDS. She says its to get me off the Prednisone. My Pred side effects are bad. I just started Rayos at 6 mg instead of PRED.  Been on the DMARDS for 4+ months, the only difference I feel is my back stop hurting, but that could be due to Bowen work that I continually do. Otherwise I still have PMR a pains at lower percentage of course. Have had PMR for just over a year. I'm 54.
    • EileenH
      EileenH LayneTX

      Posted

      I don't know where she gets the idea that plaquinel and sulphasalazine will get your off pred. Nor why she feels they are better than pred at a low dose. I'd love to know her reasoning. The only logical one has to be she doesn't think it is PMR>
    • Charlieschoc
      Charlieschoc gillian_25383

      Posted

      Yesterday this doc said he wanted me of the steroids because he was worried that starting them so young would affect my bones even with the drugs to help stop that. I had a full hystorectomy at 35 so have been on HRT ever since he said that puts me at more risk?

      All I know is the steroids have given me my life back. I know they are not good for me but I yhink I am in love with them lol. Frightened these new drugs will have me taking backward steps c

    • EileenH
      EileenH Charlieschoc

      Posted

      You were in contact with MrsK from the northeast support group when this all started weren't you Charlieschoc? 

      She had a full hysterectomy in her early 30s and happened to be put onto premarin (I think) at the time because there was a clincal trial being done. When the trial was finished she continued with it, still takes it today as far as I know, and she is in her late 70s. She had GCA so was put on really high dose pred and (because she knows about these things) insisted when they wanted her to take "bone stuff" that she had a dexascan: 97% of a young person's reading or thereabouts! Obviously no need for "bone stuff". She did take calcium and had a very high dose vit D supplement eventually when she was found to be very deficient - although it is possible that the calcium led to gallstones.

      I also took HRT for a long time - to manage sweats and fatigue, not because I was post-menopausal - but I also have good bone density. I stopped the HRT after one scare too many and the PMR developed within a year. Coincidence? I suspect not. I wish I'd ignored that article.

      Your doctor may be a fairly good rheumatologist, I won't argue about that, but he's pretty poor at gynaecology. The full hysterectomy DID put you at risk for osteoporosis - that is why you were put onto HRT, the clue is in the name: Hormone Replacement Therapy. You are now no more at risk of osteoporosis than anyone with a full set, nor will you be as long as you take HRT. The latest take is that it isn't bad for you after all (well, that's this month's version) and that it should possibly be thought about more for prevention of osteoporosis. The pred may make a difference - but in 4 years of taking pred my bone density didn't change at all. Neither did MrsK's.

      Pred and osteoporosis do not always go together - only about half of patients on pred develop low bone density. Unless they had had a dexascan before the pred they cannot know if it was the pred that caused it or simply the luck of the draw. One of the biggest risk factors for osteoporosis is immobility - and one of the risk factors for immobility is going to be untreated PMR. I could barely get out of the house, if I couldn't drive to very close to what I wanted to do I couldn't go. My level of activity was reduced drastically. I went from being in the gym almost every day doing proper aerobics to struggling to do aquaerobics - where the impact of the exercise is greatly reduced and so less effective in preventing osteoporosis. I did manage to ski a bit, but that isn't impact exercise (well, it can be, but of entirely the wrong sort rolleyes  ), I couldn't walk far, I struggled to go up stairs and slid down leaning on the handrail. 

      No - he's barking yo the wrong tree I think! 

    • Charlieschoc
      Charlieschoc EileenH

      Posted

      That's really interesting and I can see exactly where you are coming from. Food for thought indeed. No problem with calium n gall bladder I had that removed 2 yrs ago. There isn't much left inside now lol. I only wish my missing bits made me weigh less...

      I think I will try the Aza and see how it goes. I am due to see Professor Bowman in 6 months. If I don't react well to reducing the pred I will put my big girl pants on and tell them to leave me at a higher dose. ( that's if I am brave enough) the pain will be my deciding factor.

  • snapperblue
    snapperblue Charlieschoc

    Posted

    Doctors' prejudices are so frustrating!  Did they never take statistics?  If the "typical" age is over 50, that does not mean that no one under 50 has PMR! Also, the assumption that taking prednisone is inherently "bad" overlooks the fact that untreated PMR is "bad" too (longterm pain, limits on activity, reduction of social life, and chronic inflammation of the blood vessels).

    Is age the only thing that suggests this is not PMR?  If 15 mg relieved stiffness and the kind of pain that is characteristic of PMR, I think that outweighs the age factor.  

    Even if it not "PMR," why withdraw a medication that works? No one wants to be on prednisone or denies the negative effects, but freaking out at "moon face" makes no sense at all.

    It seems like you are quacking away like Eileen's duck, and they are saying "not a duck.."   They are not suggesting a specific alternative like "a grebe," or "a cormorant," just "something other than a duck."  

    Maybe you are just a somewhat young duck.

     

    • EileenH
      EileenH snapperblue

      Posted

      The average age of onset is said to be 72 - there remain doctors who will try to tell you you can't have PMR because you aren't over 70! That rules a lot of us out!

      I think it is getting worse - yes statistics is included at some point in medical training, or at least it was at one time, but unless they do research they forget it all. Even if they do do research they have a tame statistician in/attached to the department and they tell them what they want to find out and s/he tells them the number of patients they need to include to be "valid" and which tests to plug the numbers into - the computer does the rest! That's part of the reason there is so much crud research talked about in the media. To be topical, yes, alcohol is associated with an increase in cancers of the mouth/neck but only significantly so in combination with tobacco use. Not quite the same is it?

      The support charities have persuaded the BSR to change the guidelines to "Consider in patients over 50 with the appropriate symptoms" - but it remains fixed in their minds that you have to be "old". 

    • Charlieschoc
      Charlieschoc snapperblue

      Posted

      I think I would be happy to be a young duck. Lol. Some days before pred my 76 yr old mother (who also has PMR) would be caring for me helping me dress doing my housework etc. Since pred I have bern great not 100% but about 70 to 80% better. I still have to pace myself but can do so much more. On a good day I can climb the stairs in 1 go on a. Not so good day I have to rest half way. Not the kind of thing you would expect from (a previously very fit and active) 44 yr old.

      Its finally nice to have a doc that admitted there was something wrong even if he wont commit to saying its PMR.

      IRONICALLY on the blood test forms whete it asks the reasons for the tests he wrote PMR!!

    • EileenH
      EileenH Charlieschoc

      Posted

      You couldn't make it up could you?!!

      So I'm assuming those xmas choccies got done then?

    • Charlieschoc
      Charlieschoc EileenH

      Posted

      They certainly did. I didn't make as much as previous years but importantly I didn't let any customers down either. It was very hard going. I would break the day down into 3 chunks. Take kids to school. Work a few hours. Take a nap. Collect kids. Work some more. Take a hot bubble bath. Work a bit more. Then crawl into bed. Its was hard going but I got there xxx
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