Advice please

[Griggser]

I won’t go back over my history but I have been up and down on pred and tried lots of steroid sparing drugs, all to no avail. Anyway I have been struggling for a while now having tried to reduce getting to 10mg and having to go back to 12mg. The issue I have is I seem to be getting worse and my head is telling me I need to go up to a higher level. I’m not sure what that is and having just read the NY Times article posted by Hindags I’m thinking it should be by a decent amount? I’m not due to see my Rheumy until sometime in September but life is pretty crap at the moment.

[Hidden]

Hi Griggser

Have you seen your GP recently & had some Bloods done? That might be worth doing first, can you ring the Surgery & ask to speak to the GP to arrange blood tests, then think about trying 15mg for a week or so as you can come straight back to where you were at 12mg

It may just need hitting on the head, if you’ve got some blood results to back you up, it’s something to show the Consultant.

I do hope you feel better soon.

MrsN

[Griggser in reply to Hidden]

Thanks for the reply. My Dr always tells me to discuss any PMR related problems with my rheumatologist. Last blood test in jun showed my CRP as normal at 4.8 which is the lowest its ever been. I think trying 15mg for a few days might be the way to go.

[Hidden in reply to Griggser]

It’s worth a try as it may prove something & at least you can drop back down to 12mg if it doesn’t help.

Let us know how it goes.

MrsN

Off to Rheumatologist this afternoon!

[Hidden in reply to Griggser]

I think it's worth checking full panel not just CRP. Don't even mention PMR just say how you feel. It could be anemia, vit d deficency, hba1c, prostate, thyroid, glandular fever ..anything. You need to check it's not PMR so you can stop trying different things if it's not pred/PMR. Drs can get very lazy when you have a chonic condition. I have had to push at various times for thyroid, diabetes, PMR, fibromyalgia, glandular fever etc to be checked and my instinct and feeling that I wasn't well was supported by blood tests....but no apology for having to go back to see them several times and being fobbed off. Good luck and let us know. 🌻

[SheffieldJane]

I am so sorry that you are still suffering Griggser. The trouble with all this failed medical intervention is that it seems to disrupt the PMR journey for some people and actually set them back. Is it possible to ring your Rheumatologist’s office and let them know how symptomatic you are? It is pointless under treating your symptoms, unless the doctor thinks you have something else going on. Personally, I have kind of kept my head under the radar and carried on with just Pred. steadily tapering down unless symptoms dictate otherwise. I got stuck at 7 mgs for about a year but am now down at 4 mgs and will lower further when I get back from a couple of weeks meeting up with family in Ibiza. I will have a Synacthen Test when I get to 3 mgs and then hopefully taper extremely slowly to zero or thereabouts. 3 years 6 months PMR.

I know that there will be a period of rehabilitation after this. These diseases and their treatment shake you to the core. Here’s hoping.

[Griggser in reply to SheffieldJane]

I have emailed and rang the rheumatologist office and basically they did not offer any advice. A recent MRI has not shown up any issues / abnormalities in my hips. It is my hips that give me most of the problem although my shoulders don’t like to be left out. Fatigue is also getting worse.

Enjoy your family time in Ibiza and good luck with your reduction plan. Personally I’m looking forward to getting away for a couple of weeks in October to lanzarote. I always feel better when we’re there!

[SheffieldJane in reply to Griggser]

Personally I would use my own judgment then and explain why when I got to the appointment. I wonder if some gentle physical therapy would assist you. Like Pilates and swimming.

Have a lovely time in Lanzorote.

[Griggser in reply to SheffieldJane]

Thanks for your reply. Yes I need to use my own judgement your right. It’s goid to get the support on here even if you think you know the answer. I did try Pilates but don't think it was the right class for me, too genetic where in need a bit more one to one. I really dislike swimming and find it makes my shoulders more sore.

[SheffieldJane in reply to Griggser]

My physio does a bespoke class for my husband and I. Adjusting as she goes along. My OH seems to benefit more immediately though, no pathology, just a lot of travel and being tall. She charges the same as she would for one patient. She can’t be the only one. It’s actually good for a laugh ( for me anyway with my unpleasant side).

[Pollyanna16 in reply to Griggser]

Hi Griggser, I have a wonderful Pilates teacher who is a physiotherapist & last year had lots of 1.1 sessions with her. Now I go to her class each week. She was wonderful whilst I was recovering from a bad fall onmy shoulder & very supportive whilst going through 6 months of working out what was going on with my adrenals. She lives in Tregony & would come to your home. Message me if you would like her details.

[suzy1959]

I just wanted to join you in solidarity.

I have had PMR for 7.5 years, tried 3 different DMARDS to no avail and have basically stayed on 11mgs most of this time. Any reduction has led to a flare and I also flare if I'm in a lot of pain which I am at times due to OA and 2 recent replacement surgeries. I am about to have more surgery, so no reducing for the next year or so.

I sometimes worry that my PMR journey is unusual, but my Rheumy, Dr. Hughes, is not worried about this. I guess we have to remember that everyone's PMR is different and keep going!

[jinasc in reply to suzy1959]

Keep hold of Rod Hughes, one of the best.

[Griggser in reply to suzy1959]

Thanks for your support and good luck on your journey.

[Noosat in reply to Griggser]

Could your hip pain be due to something else, such as osteoarthritis? That is what occasionally gives me hip pain. Good Luck !

[Griggser in reply to Noosat]

I keep asking if it could be anything else and the MRI didn’t show any abnormalities.

[SheffieldJane in reply to suzy1959]

...and his reputation precedes him. Lucky you!

[powerwalk]

I really just want to support you. I recently posted that i seem to be going backwards. I wish i knew the answer. The fatige for me is horrendous and last couple of days my feet are literally behaving like i sprained them

I am limping round the house! I hope you get some answers and relief. I too have a trip coming up though now wondering how the body will hold up!! Let us know how you go.

[Griggser in reply to powerwalk]

Thanks and I hope you get some relief soon.

[jinasc]

Have you tried any of the tapering plans..............you can follow them for reducing by more more than 10% at a time. But wait till you have sorted yourself out and feel a bit better.

Follow this link to the 'but you don't look sick

butyoudontlooksick.com/arti...

I was recommended to read it and it did help so I downloaded it and gave to some other PMR & GCA people who were not on the internet.

[Griggser in reply to jinasc]

Thanks for the link, I’ll have a look at it later. I have tried tapering using a couple of plans but probably rushed things. I think I need to increase until out of pain and then start again.

[DorsetLady PMRGCAuk volunteer in reply to Griggser]

Yes, good idea.

[11caroline29]

Sorry to hear you are struggling at 12 mg. If it was me I would probably increase to 15mg for few days to see if any improvement.

I have been on steroids for 5 years for PMR and GCA. Stuck at 10mg for a long time. However whilst in Lanzarote in March I flared and increased to 15mg and had great improvement in 2 days. However when I seen my new Rheumatologist in April she was not pleased with increase. She and my GP feel I should continue to taper along with cocodamol. Therefore have reluctantly decreased 1mg every 4 weeks. However the problems have started all over again since I reduced from 10 to 9mg over last 2 weeks. Sore hips thighs lower back shoulders fatigue and a lot more headaches. I doubt I will be rushing to taper down further anytime soon. It’s hard to please medical staff at times but only you can feel the pain and know when action required. I feel sometimes what’s the point of taking lower level of steroids if they are not controlling the pain?

[Griggser in reply to 11caroline29]

Thanks for your support. You are spot on when you say it no point being on lower levels if they are not reducing the pain and only you know what your body is telling you. Let’s hope you get some relief soon.

[PMRpro Ambassador in reply to 11caroline29]

Which would be fine if co-codamol works - but it almost never does...

[tina-shelley]

Hi Griggser, i’m So sorry you seem to be making a backward move....not good for your morale. I finished my PMR journey 1.8 years ago after 5 years and I Definately put my success down to the dead slow and almost stop method. Following 2 flares whilst reducing I consciously decided to go dead slow with my reduction no matter how well I felt. I stayed on my dose religiously even when I felt I could have reduced quicker. Yo yoing is no good and in the end you have to up the dose considerably making reducing more difficult. I say up your dose and from now on take things slowly. I don’t know about your rhumy but mine was fabulous and allowed me to adopt the dead slow method with no intervention or rush to get me to reduce quicker. I do hope you feel better very soon. All the best.

[Griggser in reply to tina-shelley]

Many thanks and nice to read a success story😀

[Daffodilia]

Don’t suffer - go back to level you felt ok at

[Louisa1840]

Your journey sounds a lot like mine Griggser. Read my post "Feeling Supported".

We read about fortunate people on this forum who've only had PMR for a couple of years and they've tapered down with no problems. Then there's others who've had it for years who cant get below 10mg a day.

I feel as though I'm back where I started well over 2 years ago and yes I feel it in my hips too. I saw my GP yesterday & she said to go back up to 20mg for a week & then drop back to 15mg. I have tried methotrexate & felt worse and it may be that is still working its way out of my system?

I too feel like crap but there is only onwards & upwards! Try to stay positive & count our blessings.

Let us all know how you progress?

[Lochy]

It is a very frustrating condition we are all dealing with. I’m 3.5 years into my journey and am now on leflunomide and hydroxychloroquine on top of my daily pred dose. I understand your frustrations as I never seem to be totally without pain and pop paracetamol when need too. I don’t really believe the DMARDs are having much effect so have tracked down my rheumatologist email address and recently set her my thoughts. My next appointment isn’t until mid November and I just feel I need some reassurance or something. I’m suggesting I stop the DMARDs as like you it’s not speeding up my reduction. It’s taken me a year to get from 10mg to 8mg. Always have niggles and for me it’s my knees. The pain can be quite debilitating at times hence my belief all the other drugs aren’t working. I’m not sure I’m brave enough to just give up myself but it might be the only way to find out.

If only we were encouraged to believe it’s actually ok to be taking prednisolone I think that would help. I do wonder why I’m taking all these other chemicals in drug form and why they’re ok and pred isn’t.

My GP is very supportive but will also leave it to my rheumatologist for any drug discussion. I do get my bloods done monthly because I’m on leflunomide but I’ve never had other tests repeated and perhaps this is worthwhile for us all as it might not just be PMR we have. As we all know once we’ve been put in the one ‘medical box’ it’s virtually impossible to get out of it.

The NY Times article was interesting and the comments were fascinating. The doctor who had strong feelings on Lyme disease was interesting and I don’t think I’ve ever been tested for that.

Patience is the virtue we all need. I do find it hard to stick to the DSNS method but I’m getting much better and it’s reassuring to read the success some are having.

Wishing us all continued tapering success. Hope your increase dose nips things in the bud and that you enjoy lanzarote. Sometimes just writing a post is cathartic and reading posts daily I find a great help.

[cranberryt]

Hopefully you can get some bloodwork done to see if that tells you anything. My rheumy tests my esr 1 week after each drop.

[Griggser in reply to cranberryt]

To be fair bloods are done every month and the last ones did show all normal which is frustrating. I’ll get them done again soon but first I’ll up the peer for a few days.

[Nanna71]

Actually I have no advice, just support and to say that the worst thing for me is reducing from 20. Finally, I am down to 15, yet again, but more slowly, and I feel a few aches but nothing increasing so I will stay on 15 until I feel great (well, as great as it gets) and then 14. I have RA with overlapping PMR so I take a load of Dmards too: MTX, sulfasalazine, plus a lot of supplements. Why it is so difficult to prevent a flare I do not know. I started on pred. in the hospital when I was very sick before diagnosis at 50 mgs almost a year ago and have been yo yo ing from 20 for months. I think you are doing great.

Some people are more sensitive than others with prednisone reductions.

[Griggser in reply to Nanna71]

Thanks for reply and support, it is helpful. Good luck with your reduction.

[sandydame]

GRIGGER and ALL, I have had PMR since 2014, a vey acute onset awoke unabl to walk or lift a cup of coffee. to my mouth. Put on 40m (fear of GCA)of pred with rapid reduction to 30 then 20 the 15 over a about 3 weeks. Very slow reduction from 15m down to to five over 4 months or more. Since 2014 two flares one in fall of 2018 one in Spring of 2019. Had moved and gotten a new Rheumy. She put me up 1m at a time, an utter misery unti I convinced her it had to be more. or ER.. she took me to directly to 10 , flare gone overnight!! 5m is the lowest I have ever been abe to go. For which I am grateful . I had stayed on 5m for as long as 4 years until move and lots of stress I believe bought on the two flares. I agree with other comment not to INCREASE enough , also SOON enough , is so useless, just days of bad pain, sleeplessness, until my new rehemy understood. I firmly beief in VERY slow reduction to wake up adrenals. I went from 10m to 5 at the rate of one a month. Now fine again on just 5m. Have no desire to reduce furhter as 5m have a petty low damage affect. This seems to be my maintennace dose. One try to 4 was heading to disaster, wen t back to 5m quickly. I try to follow a diet recommended for arithritis, no white flower no suggar, low fat . Regular exercise,, Yoga and walking. Big help. Unusual...in the worst two painfu flares my lab work showed NO hieghtened inflammation, so that is not followed by my reheumy as a guide. This has shown to be true in SOME PMR sufferers lab work for inflammatin, does NOT register. But the Pain does! Sorry this is kindf long and mostly my history. First entry. So glad to find this sight as people do not understand PMR. Especialy the fatique. Comes and goes without explanation . Difficult to plan. I am 80 and thankful I have a rheumy that thinks old alone does not equal pain and one shoud be listened to carefully. Be calm and carry on. Calm and peace is a blessing is a blessing to the body and soul. Pursue it.

Serena

[Hidden in reply to sandydame]

Thank you for sharing your story with us sandydame and welcome to the group. I'm glad to hear you stood your ground against the rheumatologist. Treating PMR should not be a one size fits all - tick box exercise.

You sound like you have a pretty good grasp of understanding treatment. I love the mantra about peace and calm is a blessing...so so true!

[Griggser in reply to sandydame]

Thanks Serena, it’s good to read that I’m not alone in the trials and tribulations of this horrible disease. Thanks for taking the time to give a full picture and I hope you continue to get the support you’ve found.