Rheumatology appointments

[Marlenec]

I was diagnosed with PMR October 2016, starting dose 15mg which worked a miracle. Found this site and tapered DSNS which worked very well, only one flare, until I tapered to 5mg. At my appointment with rheumatologist in April I stressed that I still had PMR pains in shoulders and upper arms, felt tired all the time and some days extremely fatigued. Rheumy sent me for Short Synacthen test and told me to carry on reducing. I was on 4.5 when I had the test in May. Next app. with rheumy was July when I was on 3mg. He told me that "there was a poor cortisol response, however baseline was reasonable". Baseline 220 - response 365. He said to carry on reducing to 1mg till November appointment and if I still feel the same will send me for another test. I complained that I still had the shoulder and arm pains and some days feel so exhausted cannot do anything. Dr. Pease said that the pains were to do with my cervical spondylosis, (which is totally different), told me to raise my arms, which I did and he said "you're ok you can hang the washing out". He also held my head and twisted it from side to side to listen to the grating. It took me 2 weeks and a lot of cocodamol to get rid of the pain he caused.

I didn't want to reduce but I did want to have a retest because I felt so ill. So I started the taper and had an almighty flare. I had a week on 5mg but they didn't work at all so now I'm on 7mg. My shoulders and arms are still painful but not as bad, still having night sweats, but I now have some energy back and don't feel lethargic and so down.

I shall tell my GP that I do not want to see him again and hope she will agree.

Can you please tell me should I wait until the pains go completely before I taper again?

Sorry this has been such a long rant. I was going to ask for help and advice when I was on 3mg but couldn't. Thank you for reading this. Best wishes to everyone.

[Rugger]

I'm sorry you're having such problems, Marlene. I've had 2 flares since I was diagnosed with PMR in May 2016. Each time, I've stayed at the increased dose of pred until I felt the symptoms were under control - it took weeks to achieve that. I then tapered at 0.5mg per month, but that didn't stop me flaring the second time

I believe that I reduced the pred too far each time and dropped below the dose that was needed to control the inflammation. It sounds as if you might have done the same, as you were complaining of pains on 5mg and yet were encouraged to continue to taper!

Have a look at my last post with the graphs of my flares and pred doses.

If I were you, I would stay at 7mg until I felt very much better, then start a very slow taper.

Make sure your GP knows how you are and what you're doing.

Take care x

[Marlenec in reply to Rugger]

Thank you Rugger - looking forward to seeing you at the meeting in Leeds. Best wishes Marlene x

[PMRpro Ambassador]

I won't comment on my opinion of CP. I agree - don't see him again.

And if ANY doctor told me I was OK to hang the washing out I would lodge a complaint via PALS. That is gender discrimination - he wouldn't say it to a man so he needn't say it to me.

I'd give the 7mg a chance and see if it does the job. And then I would reduce VERY slowly - I do hope your GP will agree to manage you.

[Marlenec in reply to PMRpro]

Thank you for your good advice PmrPro and I think I will make a complaint to PALS.

[Daisychain12 in reply to PMRpro]

PMR pro so glad you agree. I am disgusted. Xxx

[Rimmy in reply to PMRpro]

Let alone the 'NECK 'TWISTING' !!!!

[PMRpro Ambassador in reply to Rimmy]

Without an x-ray first!

[SheffieldJane]

This is the place for rants and you have been treated in an inept, appallingly, insensitive way. I also have Cervical Spondylosis and can painfully empathise with what that er doctor put you through. I agree that the pain is quite different to that of PMR. I wonder if your doctor could refer you to an Endocrinologist, given the concerning results of your short Synacthen Test? I would have increased my dose too and would be in no hurry to taper until I was sure everything had settled. I would not see any benefit in visiting that Rheumatologist again.

[Daisychain12 in reply to SheffieldJane]

Darling Jane. Always such good advice xxxxx

[Marlenec in reply to SheffieldJane]

Hi Jane thank you for your advice and being so sympathetic. Hope to do it through GP now and when I do taper it will be exceedingly slow. I will ask to see an endocrinologist if same problems when I'm down to about 4.5 as I think that's when steroids don't produce enough cortisol. Hope this will be ok as I know absolutely nothing about hormones. I've not been on this site for a while, I have depression but now on medication. So with that and more pred hope to get back to being me. Thank you again and good luck with everything. Best wishes Marlene xxx

[SheffieldJane in reply to Marlenec]

I am sorry that depression has you in its grip. Even though we have logical reasons for feeling depressed it doesn’t mean that we shouldn’t seek treatment. I hope it lifts very soon, it is the pits, I know.

Stick with us, whether you post or not. It helps with the isolation, doesn’t it?

Your plan of action is spot on.

Just finished with the mangle and off to peg the washing out,before scrubbing the steps. 😉

[Marlenec in reply to SheffieldJane]

You can borrow my scouring stone Jane 🙂

[SheffieldJane in reply to Marlenec]

😂😘

[Suet3942 in reply to SheffieldJane]

Hope you’ve black leaded the grate!!😂

[Xanthe12345 in reply to Marlenec]

Hi Marlene I too got anxiety and depression at 6mgs. Doc prescribed mirtzapine after a month of talking and it really helped. Still taking it but a bit worried as I am down to 6mgs again.

I do hope your meds help and I am always on here if you need to unload.

Pat

[Marlenec in reply to Xanthe12345]

Hi Pat

Thank you for your support Pat. I'm taking Sertraline but have headaches most of the time and some lightheadedness. I see my GP in a week so will have a better idea by then if the problem's caused by that or maybe I was on too low a dose of Pred for too long.

Take it very easy as you know one false step .....

Best wishes

Marlene

[Xanthe12345 in reply to Marlenec]

Hi Marlene,

Setraline made me feel really awful.....been so much better on mirtzapine. No side effects except morning grogginess.

Reducing steroids just depresses me for some reason.

I have not managed to get below 6mg.... dread to think what 5.5 will do.

Keep smiling

[Marlenec in reply to Xanthe12345]

Hi Pat

Do you do the DSNS method of tapering? You could always put a few more days of old dose into the mix. I do that sometimes if I'm not too sure.

One thing I do to help mentally is walk. When my Dexa scan showed no problems with bones I refused to take any more Alendronic Acid, bought a Fitbit and do as many steps as I can. My husband is a real support and we walk 3/4 times a week on a canal towpath, have a tea/coffee and walk back again. If I cannot have this fresh air and exercise it makes a real difference to my wellbeing.

Look after yourself. xx

[Xanthe12345 in reply to Marlenec]

Thanks Marlene

I have followed the dead slow method and have no aches and pains to speak of. So I am lucky there. Will continue and up dosage at the weekend For a few days I think.

Hope your meds settle down soon. 👍

[Daisychain12]

Marlene I am still in shock at him saying you can hang the washing out. Has he heard of women’s rights or is he still in the nineteenth century? Seriously that was a very derogatory thing to say and you deserve respect and treatment not an atrocious comment like that. I don’t have the knowledge to advise you but there are wonderful people here who can. Please don’t accept that sort of rubbish comment from someone who is meant to be helping you xxx. Linda xxxx

[Marlenec in reply to Daisychain12]

I won't be seeing him again whatever happens and shall complain about his attitude and unhelpfulness. If he had his way I would be off steroids altogether now as he always tried to make me taper much quicker and said to take pain killers for the pain. Which of course doesn't work anyway or we'd all take those instead. When I first saw him I told him how helpful this site was. He knew about it and scoffed saying that the people who give advice have their own agenda! However their agendas are to help people who are in need and it works. I feel he does more harm than good. Best wishes and thank you. Xxx

[PMRpro Ambassador in reply to Marlenec]

It is strange - I attended a video conference he was part of too. Never made a peep about patient comments then. But his reputation does go before him.

[Sandradsn]

That's so rude,don't see him again !my previous Gp rushed me down to 1mg and I felt very ill and awful. I saw a different one and she put it up to 5mg ..phew felt better😁

[Marlenec in reply to Sandradsn]

Thank you Sandra. I think I would have died on 1mg I felt extremely ill on 2.5 like I had very bad flu, head too heavy and nausea. I only got out of bed to take another 5mg. Hope you're tapering very, very slowly. Best wishes xxx

[Jud666]

Hi Marlenec

I have had a similar experience with the "professionals " My GP and specialist in complete disagreement with one another. My last post will show you the vast amount of support i received from everyone on here.

[Marlenec]

Hi Jud666

I agree with you about this site. Without this amazing knowledgable help and support we would be so much worse off.

Thank you, take care.