Judywalks

[Judywalks]

To those who replied to my post last week here is an update re my visit to the Rheumatologist today which I wasn’t looking forward to.

I was seen initially by the clinical practitioner who I find easy to talk to. I explained how I have been feeling since stopping Pred in January. Fatigue, lightheaded, brain fog and very achy. I talked about my acute anxiety re a flare of GCA especially if Methotrexate is reduced too.

She went to talk to the consultant who then came to see me. She is still adamant that I don’t need Pred. and is still talking about reducing Methotrexate. I said I didn’t agree with her and didn’t want this to happen but she wouldn’t budge. My son-in-law who came with me talked to her too. I said I had done some research and that other rheumatologists had a different approach. This didn’t go down too well!!

After more talking with the Clinical practitioner about adrenal insufficiency etc she has given me a blood test form to test that plus thyroid and iron levels.

So I am still on Methotrexate 20 mgs until my next appointment. I feel exhausted now.

I do understand the concerns re Pred etc with all the side affects especially as my immunity is low and the orthopaedics have said my bones are soft but as my son-in-law pointed out I am 80 yrs old and quality of life also has to come into the decision.

[DorsetLady PMRGCAuk volunteer]

Well at least you are getting your adrenals checked -I said in previous post -that’s what I would plump for causing your issues.

..and you SIL is correct ,QOL is important…at whatever age.

Can I ask next time you post -you don’t use your name as the title - please use the subject as title. It then brings up related posts -which may help you -and others in future.

[123-go]

What a horrible situation to find yourself in! I know that sinking feeling when an appointment doesn’t go well! You are entitled to complain to the NHS if you aren’t satisfied with the treatment you receive and in fact you are encouraged to do so. For now, I advise waiting for the blood test results so that you have something to go on if things aren’t all they should be.

Please come back here after you’ve been given your blood test results which should be available very soon after the test-several days at most. You can request a print-out via the rheumatology secretary, leaving a message if your call goes to her answering machine.

Your son-in-law is a diamond; having the support of family is invaluable when you are troubled.

[Prof99]

Oh Judy, your Rhuemy sounds like a bit of a bully! I wonder if you could get some support from your GP - particularly about being forced to reduce MTX. My own experience is that I thought that MTX wasn't doing anything for me so I asked my Rhuemy if I could come off it. He said No, but I could reduce by half the dose (was on 20mg - reduced to 10mg). I was shocked how quickly I noticed the drop and had 5 uncomfortable weeks before I decided to take myself back up to 15mg, which is better - but not as good as I felt on 20mg. My advice would be to go and see your GP and explain what happened (taking son-in-law would also be a good move) and say that you feel intimidated by your Rhuemy who seems to be forcing you to reduce when you don't feel at all ready. Perhaps your GP would support you and may consider referring you to a different Rhuemy? Good Luck.

[SheffieldJane]

She sounds adamant and arrogant, please seek another opinion.

[Jackoh]

Whatever happened to “ making a decision taking into account the patient’s wishes “ All of that seems to have gone out of the window for so many.

Do try to get your GP on your side. Don’t like the sound of your Rheumy at all, maybe a second opinion if you can get a better one. You can post on here your general area for recommendations. Stick to to your SIL , he sounds a gem. Let us know how you get on. 💐