Not sure how long to continue as I am

[stellafmdm]

I have been reducing and got down to 6mg but it was a disaster zone! I have now gone back to 8mg where I am fine. The question is how long should I continue on 8mg before trying to reduce again? Thanks in advance for your help my friends.

[SheffieldJane]

I have a similar dilemma and have been at 7 mgs for months, any attempt to decrease however tentatively by 0.5 mgs produces an unpleasant reaction that threatens to turn into a flare. You may have seen the recent thread that analyses headaches. That was me trying to discover in what way they were linked to the reduction of Pred and reaching the stage that my own Adrenals need to start working.

I was diagnosed in March 2016 with PMR, put on 20 mgs of Pred. I have tapered slowly and successfully down to 7 mgs - stopping at the early signs of trouble then carrying on.

You are reaching the tricky stage and need to listen to your own body and what you’ve learned during your disease. If you have a good Rheumatologist/ doctor perhaps they can help. Often though Methotrexate is suggested which, personally, I view as backward step.

I would give it at least a month until you are sure your symptoms have settled then try one of the tapering programmes on here reducing by 0.5.

Good luck. I am finding it a challenge but the disease does have a much longer duration than 2 years and the inflammation needs to be dealt with. It is not helpful to be continually told that you must get off the Steroids by doctors, as if taking them was a kind of self indulgence.

[GOOD_GRIEF in reply to SheffieldJane]

It's also not very helpful when someone says taking MTX is a step backwards. It's just another path on the journey to remission for some. I refused it, but not because I thought it was a backwards path.

[SheffieldJane in reply to GOOD_GRIEF]

Yes I see what you mean. It is not a drug I want to take. No offence intended. I would be interested to hear from patients who have found that it helped them to get off Prednisalone more quickly without adding unwanted additional side effects.

[PMRpro Ambassador in reply to SheffieldJane]

I don't think I have come across anyone with just PMR who was able to replace the pred with mtx - and it shouldn't be sold as doing that. If the patient has PMR then the best to be hoped for is that it may reduce the inflammation in some cases, smooth things out during reductions and change the way the body processes pred so you get more bang for your buck (some or all of the above). And that it does it without any unpleasant side effects. Nothing is guaranteed.

I think it is one of the supporting facts for the theory that PMR comes in different varieties. Pred works everywhere - but maybe other drugs help too in some. I have a friend who was able to reduce her dose of pred by using mtx - it did, when she tried stopping it she had a big flare. She had no side effects to be identified. When she switched to leflunomide she was able to get off pred altogether in 8 months. She will eventually also discontinue the leflunomide and see what happens.

[SheffieldJane in reply to PMRpro]

Thank you PMRPro the registrar at Leeds said that we could try Methotrexate quite some months ago to get me off Pred. The fact is Pred has for the most part been a good drug for me and I wanted to continue with my slow taper. I also thought hair loss was amongst the side effects.

Perhaps I ought to have a rest from the screen. I don’t seem to be adding much value today. 😳

[Tinkermore1941 in reply to SheffieldJane]

All discussion is good🤗

[SheffieldJane in reply to Tinkermore1941]

I certainly learn from it. 😉

[PMRpro Ambassador in reply to SheffieldJane]

I've had it mentioned - I'm not enthusiastic either. Leflunomide too. The biggest "oh no" for me at present is that it would tie me to the local hospital for blood tests. After last year I really can't face that...

[Purplecrow in reply to SheffieldJane]

💜💜💜 big hug... your words are very helpful. Thank you, jerri

[SheffieldJane in reply to Purplecrow]

I just got this hug and very welcome it was too. How are you? 🌹❤️

[Purplecrow in reply to SheffieldJane]

Doing well, thanks, J

[SheffieldJane in reply to Purplecrow]

I thought you might be, glad to hear it!

[daworm in reply to SheffieldJane]

You did nothing wrong...you said “personally “....you found it to be a step backwards and so do I as I do not wish to add another drug to the process...some find it helps...what I don’t like is that “rheumys” think it’s necessary, at least many of them do..

[SheffieldJane in reply to daworm]

Thank you daworm that is what I meant. How are you? We haven’t heard from you for a while.

[daworm in reply to SheffieldJane]

Plugging along..trying to get to 10 and below but in no hurry..better weather sure makes a difference...today’s a rather crappy day as far as feeling good, but I knew it was coming...two days of raking and yard work!

[SheffieldJane in reply to daworm]

I bet it looks great though. Keep on plugging.

[GerriMc in reply to GOOD_GRIEF]

I take MTX. Couldn’t get past 17.5 mgs Pred without it. Rheumy showed me a graph of my blood tests. The ESR and CRP rate dropped significantly after starting on MTX. I’m down to 5.5 now. Always a bit sore and stiff for a few days when reducing but Rheumy said I can take it as slowly as I need. I know MTX is not for everyone and people react in different ways. But I think it helped me. That said, if you’ve managed to get to seven without it, you probably don’t need it. Just take it very slowly and rest as much as possible.

[Hidden in reply to GerriMc]

I too take MTX & it enabled me to taper from 18mg to 7.5mg when l hit an unrelated bump in the road, (Breast Cancer & Chemo) for which it was stopped & l remained off it for over a year, tapering between 7.5mg/5mg through DSMethod.

But 12months after Chemo the Beast that is PMR raised its head again & l was more than happy to start MTX again.

I’m still at 7.5mg & again about to start a slow taper to 5mg.

Mrs Nails 💅🏼

[stellafmdm in reply to Hidden]

I was taking it and it seemed OK but since I was in hospital I've been banned from MTX

[Suffolklady in reply to SheffieldJane]

Hi SheffieldJane. You mentioned headache thread I was wondering where I might find it. I have been down to 7mg and my upper arm pain and hands seems under control however my neck and head pain is the thing that is getting me down. I almost have a permanent headache that worsens as the day goes on. I upped the prednisone to 10mg for four days and the headaches we minimal then reduced it gradually but they return. I am waiting for a Rheumatologist appointment but the appointment system here is rubbish and it got cancelled and it’s been four weeks since my doctor wrote a referral and to cut a long story short I am in the middle of nowhere with what to do as I have no Rheumatologist for advice and my GP doesn’t know enough about Pmr only by the book stuff which is basic. Inflammation is down but it’s these headaches that are really getting me down. Any advice would be great fully received

[PMRpro Ambassador in reply to Suffolklady]

Do you have any other signs of GCA? Jaw pain when chewing, blurred/double vision and so on. Where is the headache?

[Suffolklady in reply to PMRpro]

No blurred vision, no jaw pain, no problems with chewing. Headache is in the left side it comes from the neck up to the occipital area across the left top of the head and across the forehead into the eye socket. If I haven’t got a bad hear my head feels normal but when I have it it feels sore and painful when I press on it. I have had full bloods done and imflamation is low the doctors not to bothered about it. I have said about GCA but he’s happy it’s not that

[PMRpro Ambassador in reply to Suffolklady]

Up to 20% of GCA patients don't have raised markers...

[Suffolklady in reply to PMRpro]

So how can they check then. You are in the hands of the doctors

[PMRpro Ambassador in reply to Suffolklady]

They MUST bear it in mind and NOT say "no raised markers, can't be PMR/GCA". I have no objection to them saying "it is unlikely..." but I do have a problem when they say "it can't be because..." and the "because" is a false assumption based on a misunderstanding of the criteria. The criteria you find in the literature are not always diagnostic ones - they were developed for saying someone could be included in research which isn't the same thing at all.

[SheffieldJane in reply to Suffolklady]

The post was initiated by me 3 days ago “ headaches every evening at 6.30 pm or something like that. What was useful is that lots of people contributed with advice. Maybe you can find it by looking at my list of posts. Don’t however, let it distract you from reporting your headaches to the doctor. If you experience visual disturbance or jaw claudication then I would get to your nearest A&E in case you have GCA which must be treated as an emergency.

Having said that, the pattern you report is just like mine and I am on 7 mgs. Dull cotton wool head, becoming a bad headache by early evening. Not helped much by Paracetamol . Mine is towards the front and top of my head. It makes me very ratty. It was helped by 1 mg of Pred extra and was much worse when I tried a day of 6.5mgs. It is the main thing holding me back from tapering now. I do read and screen work too much these days.

[Suffolklady in reply to SheffieldJane]

Thank you SheffieldJane for your advice, I remember the post now, having a senior moment and forgot I’d read the post. Paracetamol is useless for the pain. I’ve tried co dydramol which I take for back pain still not helping headache also liquids morphine again it doesn’t help. My neck is so painful but only one side

[SheffieldJane in reply to Suffolklady]

I wonder if this could be unrelated to PMR and there is actually something going on with your neck or referred pain from your shoulder. I have cervical Spondylosis which gives me pain from time to time. Perhaps your doctor could refer you for an X Ray? I have had 3 and an MRI scan since diagnosis, oh and a DEXA bone density scan. You need to know what you are dealing with.

My headache has gone off now I am in bed, best place really.

[Suffolklady in reply to SheffieldJane]

You might be right. I have got scoliosis and had a fusion many years ago then a secondary one three years ago. My neck is the one part that my spine is not fused. It's only been in the last three months that I have had these constant headaches. I have had a scan years ago and have slight wear and tear. Can I ask what Cervical spondylosis is? I just know the higher dose of steriods helps and I am pain free but you are right it might not be pmr related.

My headache has subsided tonight too as I lay in bed but although beds a relief sometimes the pressure on the pillow gives me head pain so I can't win sometimes. Thank you for your advice

[SheffieldJane in reply to Suffolklady]

I think it’s just a fancy term for arthritis in my neck, it’s quite significant apparently. I blame bad posture on the computer during my working life.

[DorsetLady PMRGCAuk volunteer]

Hi Stella,

Would say at least a month, maybe 2. As Jane says tricky dose for many so the slower you do things the better. Have a look at attached - may help

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[stellafmdm in reply to DorsetLady]

Thanks DL, that is a very interesting article. I must study it again to help the 'pred brain' take it in!!!

[DorsetLady PMRGCAuk volunteer in reply to stellafmdm]

Just save it somewhere on computer, and then you can refer to it, as and when!

[PMRpro Ambassador]

That sounds as if you didn't feel good even at 7mg since you have gone back to 8 from 6mg? What were the problems you had?

I would rest at 8mg for a couple of months before trying again - either your body or the PMR isn't ready yet. It isn't a race and you are at what is called a physiological dose - about the same amount of corticosteroid as your body makes in the form of cortisol natually - so most good doctors would not be pushing you too hard.

[stellafmdm in reply to PMRpro]

My main problem was an excruciating one sided neck pain. The other side was tender to the touch as well. 7mg didn't really knock it! thanks for your advice, I've just remembered I've a Rheumy appointment at the end of June so I'll keep it at 8mg till I see him. (A new one) I think the old rheumy is fed up with me and has passed me on to a colleague.

[PMRpro Ambassador in reply to stellafmdm]

Perhaps worth getting a physio opinion about the neck pain. I have myofascial pain syndrome and it can make my shoulder and neck muscles very painful because they go into spasm. If it is managed with therapeutic massage I can manage with a lower dose pf pred.

[stellafmdm in reply to PMRpro]

that is a good idea PMRpro, thanks!

[Purplecrow]

Hi, I have stayed at the break-over doses for 1-2-3 months...no harm, and it feels good to to just rest without tapering, for a short period...

[Fl17]

What kind of med?

[stellafmdm in reply to Fl17]

Prednisolone

[Fl17 in reply to stellafmdm]

Ok, theres a non profit company that helps one get off psych? Meds. Some of their products may help you. POINT OF RETURN. Wish you the best. ox ..

U can call them of course, and ask.

[PMRpro Ambassador in reply to Fl17]

Prednisolone is an antiinflammatory drug, a corticosteroid. The problems most people on this forum have with "getting off" steroids is related to the disorder for which we take them - an autoimmune vasculitis. If it is still active, we still need pred to manage the symptoms and finding the lowest dose is tricky. Below about 8mg/day there is an additional problem of the body having to produce its own corticosteroid, cortisol, again as at higher doses it stops making more.

No products for drug withdrawal will help either.

[Fl17 in reply to PMRpro]

Ty for sharing. I hope you all find some relief. ox ..