T2305

[T2305]

I am new here, been diagnosed with PMR and Osteoarthritis in my hands and wrists, on 10mg tried to down to 9 but had withdrawal symptoms and had to back up to 10mg, going to rheumatologist next week.

[T2305]

Unable to change the “tag” why ?

[DorsetLady PMRGCAuk volunteer in reply to T2305]

Think that’s done by system, not the user!

[Hidden]

You should be able to delete it by the edit function. I am sure i have deleted some before but not sure how you add them...as DL says the system. (Jic- Click more then choose edit and scroll to tags. )

[DorsetLady PMRGCAuk volunteer]

Hi,

Was 10mg your starting dose? If not, then what, and how long were you on initial dose? .

4-6 weeks is best, and then reduce slowly to find the level that gives you the same relief as starting dose.

Obviously 9mg too low, but a bit more information about your situation and treatment to date would help us give a more detailed and meaningful answer.

[T2305 in reply to DorsetLady]

Started on 15 got down to 4 tried to go to 3 but things went bad go told me to to 10 tried about 4 times to lower dose but not very lucky, now been on 10 for 5 weeks, blood test on Friday then seeing Rheumatoigist on Monday.

[Soraya_PMR in reply to T2305]

Do you drop from 10 to 9 overnight?

Try a drop to 9.5

Or try one of the slow reduction plans.

[DorsetLady PMRGCAuk volunteer in reply to T2305]

Agree with Soraya!

[T2305 in reply to DorsetLady]

Latest update, sorry I have not been on this site for a while, but saw Rheumatologist, had blood tests, told no PMR, get off the steroids, dropped by 1mg every 4 weeks, now down to 2mg should be off mid January, must have been a big flare up of my osteoarthritis, but as from June this year I have been the organiser of the Whitstable PMRGCA Support Group, with a big thank you to Penny Denby, and the Whitstable Medical Practice, we meet every third Friday at the Riverside Vineyard Church Thanet Way CT5 3JQ from 2pm-4pm, all welcome if you live in Whitstable or surrounding areas, I am in contact with medical practices in Herne Bay, Faversham and the two big ones in Canterbury, in the hope they may like to join us, still waiting for replies.

Tom

[e-mail]

[DorsetLady PMRGCAuk volunteer in reply to T2305]

Will be interested to hear how you go on...I have osteoarthritis as well - and found it very different to GCA pains!

[PMRpro Ambassador in reply to T2305]

I suggest you report this as a new thread - so lots of people can see it. By the nature of the forum only the people who actively follow a thread see late additions to it!

And thankyou for adding to the support network.

BTW - how does he know the PMR has gone if you were still on pred????

[T2305 in reply to PMRpro]

My GP arranged for me to see a Rheumatologist, at the first meeting and after a few exercises, he said” I know what is wrong with you” I thought wow we has someone who knows what he is talking about, then he said “ you are on Steroids “ I thought he can read my notes, I had a blood test before I saw him, he asked me to have another blood test, which I did, at the next meeting he said your two blood tests were normal, you don’t have PMR, just get off the Steroids, I have reduced them from 10mg by 1mg every four weeks, now down to 2mg and just before Xmas I wii be down to 1mg and be off completely by mid January, providing my Osteoarthritis does not flare up again.

Thank you for your interest, and I hope my reply answers your question.

Tom

[e-mail]

[PMRpro Ambassador in reply to T2305]

It does - and it is what I expected!

Just because the blood markers are normal does NOT mean the underlying cause of the symptoms we call PMR is in remission, i.e. burned out. It means you are on enough pred to manage the inflammation being created at the moment - not enough inflammation present means the liver isn't triggered by something called the "acute phase response" to produce c-reactive protein and other proteins which are what cause the ESR to be raised. If you are on pred, even in a flare the markers may not appear raised until late, sometimes weeks or months later and in some people the markers may be raised for them personally but still lying "within normal range", figures obtained for a population of typically 10,000 healthy people.

[Soraya_PMR]

Welcome to the forum.

You say withdrawal symptoms made you increase your dose again. Just for clarity: withdrawal symptoms from pred reductions usually occur soon after the lower dose, maybe days 1-3 and can be helped by paracetamol and they gradually ease. The pains experienced are VERY similar to PMR pains and are hard to distinguish one from t’other. Basically it’s your body screaming “I want my pred back!” 😦

On the other hand there are true PMR pains returning which is due to the pred dose being too low (less than the inflammation of PMR) These tend to build up slower and get worse, maybe from day 7 onwards. This latter is a reason to up your dose again. Steroid withdrawal is not.

Which do you mean?

[Soraya_PMR in reply to Soraya_PMR]

Oh and has the hand/wrist osteoarthritis been definitively diagnosed with x-ray or scan?

[T2305 in reply to Soraya_PMR]

Yes, X-ray and ultrasound

[T2305 in reply to Soraya_PMR]

Please see my reply above to PMRPro dated 1 December 2019

[Marilyn1959]

Hi and welcome. Good Luck with your Rheumy appointment. You may want to ask him / her questions and many of us opt to write these down and take them to the appointment.

Meanwhile if you have any questions you can always ask them on here.

[Meggsy]

Welcome T2305. The pain which caused me to go back up to 10mg occurred between 1 and 2 weeks after dropping my dose. I then managed 9.5mg on third attempt. Tapered to 9 mg 3 weeks ago and withdrawal pain began immediately and lasted almost a week then disappeared. The withdrawal pain was very like my early PMR symptoms whereas the other began in my hands and moved upwards to my wrists, elbows and upper arms.

[Suet3942]

I’ve been doing pmrpro slow taper from 10 to 9. Seemed to be doing well when eventually on 9 all the time until a week later. Woke up with awful pains in my shoulders and neck and generally felt unwell. Stuck it for a week but today have gone up to 12mg. I’ve got pain going up my neck and behind my right ear. I don’t think I’m ever going to get rid of pmr. Had it now since 2013. So fed up.

[tina-shelley]

Hello T2305, i’ve Now been in remission from my bout of PMR FOR 1 year 4 months but took preds for my PMR for 4 years. I was very lucky as my rheumatologist thought long term and not short term. I started on 15mgs 6 weeks, 12.5 msg 6 weeks, 10mgs 6 months then 9mgs 6 weeks. When I tried to reduceto 8mgs I suffered a terrible flare and had to go back up to 10mgs. It was at that moment I spoke with my rheumatologist about the dead slow and almost stop method which he fully endorsed. I reduced only .5mgs per reduction and stayed on each new dose for 6 weeks. Don’t forget that withdrawal symptoms although very similar to flare symptoms do differ in that withdrawal symptoms should begin to improve after about 4-5 days. Flare symptoms simply get worse over that same period. It’s hard I know but don’t be tempted to increase your dose as soon as you experience these symptoms, hang on in there then decide to stay or increase. Please don’t forget your supplements, vit d, a, k2, calcium and magnesium. They will help counteract the negatives of the preds on your bones and if possible keep up with the walking as that will help with bone density. Good luck, regards, Tina