meds

[viamonv]

What is the doses you guys started on? How long before you start to feel great again?

[SheffieldJane]

Hi viamonv, Your question makes me want to give you a hug. Hang on to your good cheer and optimism and cherish yourself, plenty of rest and don’t do anything you don’ t really want to do. Avoid stress and vexatious people at all costs. Always taper your dose of steroids down very carefully and slowly, using one of the recommended taper programmes on the site. We are lucky that the diseases we have usually burn themselves out but we are talking a few years. The art is to manage the disease in such a way that it doesn’t manage you. Stick with us there is a lot of wisdom and support here. I wish I could say May 16 2019, but nobody knows. 🌸

[HeronNS in reply to SheffieldJane]

Sheffieldjane, when I started pred my doctor neglected to tell me that it didn't cure PMR. So I thought, after I'd received the miracle relief of symptoms in a few days, all I had to do was taper according to plan (five weeks at 15 mg, then taper by 1 mg per week) and I'd be done and dusted in three months, a whole new, cured me! It was the Patient forum which I found in the middle of a sleepless night when pain started to return as I tapered to 9 mg that I learned otherwise. I started pred in June, 2015 and despite a relatively untroubled journey (one long flare but not needing a very high dose to control) I'm still here. Three years and counting, not three months! I actually like May 2019, although I think I'd prefer May 2018!

[JanetGarrettN in reply to HeronNS]

Sounds like your and my doctors must be Brothers...

[HeronNS in reply to JanetGarrettN]

Well, siblings, mine's a she.

[JanetGarrettN in reply to HeronNS]

Fraternal twins Lol

[viamonv in reply to SheffieldJane]

Thank u sweetheart.

[Hidden in reply to SheffieldJane]

Love the word vexatious. Nice reply Jane.

[Hidden in reply to Hidden]

ME TOO!!!

[Hidden in reply to SheffieldJane]

Hey SheffieldJane, I think you just told the lovely viamonv to avoid me!!! ; )

I had to look it up, but VEXATIOUS - annoying, irritating, irksome, infuriating, maddening, exasperating, provoking, galling, rankling, grating, jarring, harassing, harrying, bothersome, tiresome, troublesome, niggling; upsetting, perturbing, worrying, worrisome, concerning, trying, taxing, distressing, traumatic, unsettling, unpleasant; difficult, awkward, problematic, inconvenient, lamentable, deplorable;

Hahahahahahaha.

[Sandy1947 in reply to SheffieldJane]

Vexatious sounds so civilized to describe toxic, noxious people!

[SheffieldJane]

PS. For GCA it tends to be around 60 mgs of Prednisone.

[HeronNS]

What dose are you on? I think you said you have a GCA diagnosis?

[viamonv in reply to HeronNS]

Yes got me started on 60

[northwesterner]

I was diagnosed with PMRGCA in June of 2014 and started at 80 mg then reduced each week by 20 mg until I got to 20 mg then reduced by 5 mg every other week until I got to 10 then that’s when everything slowed down. I could only reduce by .5 every 3-4 weeks and at tomes I would have a flare and have to increase a bit. I am finally down to 4mg.

[Johnnox]

Started on 25mg and felt great within 24 hours. Tapering for about 12 months and about to go from 6mg to 5mg tomorrow. Not a happy, pain-free experience at all times though.

[Peggles in reply to Johnnox]

Same,going to try to drop to 6 today after 15 months.

The last 3 months is the first time I've not had a flare or relapse when I've tried to taper

[Hidden in reply to Peggles]

Good luck to you too! I dream of 6mg!

[Hidden in reply to Johnnox]

I wish you luck! Fingers crossed.

[Johnnox in reply to Hidden]

Try not to despair -- no time for that! My GP tells me that I will get over this without residual damage and I've chosen to believe this. There are lots of worse things - Parkinsons for example which I also have. Yet I've found courage to face this situation rather cheerfully and at 70 years of age still maintain full-time work. This is not everyone's experience but it works for me.

[DorsetLady PMRGCAuk volunteer in reply to Johnnox]

Hi,

yes I find my arthritis is more hassle than GCA/Pred was. At least, in most cases, GCA/PMR goes into remission.

Keep well.

[stellafmdm]

I started on 15mg, 20mg would have been better but Rheumy would not hear of it! now trying to reduce (slowly) from 9mg where I have been fine for about 2 months! so far so good!

[GrandBearJane]

Started on 20mg in April 2015. We had just moved house, which I think may have been a factor in developing PMR, and I saw a new GP for the first time, and he diagnosed me straight away. I felt so much better 24 hours later that I decided to move a large fridge across the kitchen. Bad idea! Need I say more?

[Hidden in reply to GrandBearJane]

: O

[DorsetLady PMRGCAuk volunteer]

Hi viamonv,

I started on 80mg, but that was because I’d already lost sight in one eye, and the higher dose was to preserve the other.more normal starting dose is between 49mg -60mg depending on whether you have occular problems.

Aches and pains went almost immediately, but it took a few weeks to feel normal again. Luckily I felt okay, from a GCA viewpoint, from then on, but I reduced slowly and fortunately never had a flare. That’s not to say I didn’t get some issues with the Pred, but that’s another story!

[viamonv in reply to DorsetLady]

Yes I have been on it for one wk. Feel some what better but the temple around is still pretty hurtful.

[DorsetLady PMRGCAuk volunteer in reply to viamonv]

Hi again,,

It may take another couple of weeks for that to go, but after then if you still have it, please discuss with doctor.

[yogabonnie]

I started at 15 stayed a month went to 12.5 stayed 2 months because I got sick in the middle. Now tapering slowly (not quite so slowly as "dead-slow-nearly-stop" (which I love to say) to 11 over a month and then will go by .5 onward.

[shazstep]

Hi, I was started on 75 last September. Presently taking 5 and having Actemra injections weekly. I also thought it was going to be a short journey. I have improved very slowly.

A couple of months ago it was an effort to walk around the house. Family and friends were doing my shopping and taking me to appointments. Now I can walk around the shopping centre for about 1/2 hour.

I wish you well. Be aware of depression as improvement is so slow.

[PMRpro Ambassador]

It depends on whether you have GCA or PMR.

If you have PMR the starting dose is 15-20mg/day. Some people will feel a major difference in hours, others may take up to a week or even longer. You won't necessarily feel 100% - an improvement of 70% within a week is what is being looked for as a confirmation that this may well be PMR not anything else. PMR is characteristic in responding clearly and quickly to this moderate dose - other things may respond to pred but not as clearly and well. You can expect improvements for some time - some of my pain, particulalry the hip bursitis, took 5 or 6 months to fade whereas the muscle pain was improved in a few days.

If you have GCA then the starting dose varies in accordance with your symptoms. Patients with GCA symptoms without any visual symptoms may be started at 40mg/day. If they have visual symptoms then 60mg/day is more likely - and may be as much as 80mg or even 100mg/day if there is any visual loss because if one eye has lost vision it is very possible the other may also go. How long it takes to feel relief from the symptoms depends on the person. Again, some people never get 100% relief. The headache, jaw pain and so on should improve considerably and if the blood markers are raised they should start to fall quite soon.

But all the pred is doing is relieving the inflammation being created by an underlying autoimmune disorder and that disorder is not affected at all by the pred but continues to chug along in the background making you feel as if you have flu. PMR and GCA are both systemic illnesses - and that is what causes some of the other symptoms, the sweats, the flu feeling, the fatigue. Those aspects may be improved in the early stages with the higher doses of pred - especially the fatigue - but the sweats may get worse because they can be due to being on high dose pred. The fatigue is something you need to look at managing yourself:

These are things that are likely to continue as long as the underlying a/i cause of your GCA is active. In time they will improve - I think when the GCA/PMR starts it is most active and, for most people, it fades over time. As it does you start to feel better. But it can flare - and there are all sorts of causes of flares but probably the most relevant include trying to reduce too quickly believing you will get off pred sooner. No you won't - because you will flare and possibly have to go to a higher dose to get things under control and then have to reduce again. And the other is stress - stress from outside and self-imposed stress due to fighting the illness. The first you should try to avoid or minimise, learn to say no, I can't at present. The second - that's your gorilla:

healthunlocked.com/pmrgcauk......

I know I seem pessimistic - I prefer the word realistic. You are unlikely to "feel great" for some considerable time - and if you start off expecting it to take a while and you feel better sooner then that is a nice surprise.

[Mikb]

I have GCA, no PMR, and I started at 80 mgs (there was eye involvement) in May 2017. I am now at 15 mgs and though starting to feel more normal, I do not yet feel capable of returning to work. The side effects of prednisone have been horrible, but as already stated, that's another story...

[strathearn]

I started on 40mg pred when diagnosed with GCA in 2015 and managed to get down to 7mg In early 2017 - on my Rheumy's taper plan. At this stage I was in agony with pain and stiffness. I was then diagnosed with PMR and returned to 40mg!! A rapid taper plan was then followed for a few months which resulted in flares and up and down levels of pred. I then found this marvelous forum and decided I would be in control of a slow, slow taper plan (Rheumy not happy!!!). I am now on 16mg, tapering at 0.5mg every 2 weeks and feel good - as long as I don't overdo things (when my body tells me "enough is enough" I stop and have a wee nap). When I get to 15mg I may consider reducing even slower. I'm 82 and, let's face it, I'm not in a race - quality of life is more important!!

Just remember - slowly, slowly is the answer. Best of luck!!

[BonnyQuine]

Diagnosed GCA Nov '16; started on 40mg prednisolone. Now on 7.5 mg, tapering very, very slowly.

There seems to be a fairly wide range of experience w this condition. The 2 previous posts - Mikb and Strathearn - both describe what I identify with. PMRpro's post gives a v thorough and accurate description of what to expect.

It takes some getting used to being unable to just carry on as before. If you can be patient with it, that will be a great help. By now I'm beginning to be able to do things a bit, and aim (hope!) to gradually regain fitness as this year goes on.

Speaking personally, must say I did become very irritable at times - could it be personality changes associated w pred, or was I always like that? Anyway, I think I was maybe a bit too outspoken when I felt someone was not understanding or was being insensitive, and I may have alienated a couple of 'well-meaning' people. Try to watch out for that? You will probably look fine, and people don't always understand that that doesn't reflect how you feel, or why you're not able to do what you always used to. When feeling fragile, think twice or more before speaking out. A friend in hand might be worth 2 in the bush.

Otherwise, just give it time. Plenty of time. It feels worst at first, and perhaps with a few ups and downs, will gradually feel better as time goes on. Safe journey.

[viamonv in reply to BonnyQuine]

thank you so much.