Getting off steroids

[kathyrob]

I was diagnosed last July and put on 15mg referred to rheumatologist in Nov appointed finally came for July this year. Have blood tests but in the last month nothing. I have managed to get down to 7mg but sal get pain in neck and hips. I have Des appointment next week with different Dr for some advice as don't know what to do next. Help is all I want in reducing steroids.

[DorsetLady PMRGCAuk volunteer]

Hi kathyrob,

What your doctor hasn’t explained to you, and you certainly aren’t the first in this position, nor the last probably.

You are given a larger dose initially to get a grip of the inflammation that has built up in your body prior to diagnosis. You then have to reduce that level in a timely manner to find the level you need to live your life as painfree as you can. No one can say what that level is, it’s for you to find out as you go. You are NOT relentlessly reducing to zero.

Your PMR is still active, the Pred does not cure that, all it does is control the inflammation caused by the underlying disease, and that happens every day you have PMR.

If you reduce too quickly, whether that’s in time or dose or both, you are likely to go below the level you actually NEED on a day by day basis.

As you’ve been on Pred for less than a year, then it’s highly likely your PMR is still alive and kicking - the minimum time it stays around is 2 years, but the average is more like 4 years.

If you are getting neck and hip pains I would say you’ve gone below your optimum dose.

Can you tell us your tapering plan, and have a read of attached, it might you help you understand your illness a little better -

healthunlocked.com/pmrgcauk...

[kathyrob in reply to DorsetLady]

Thank you for your help I know I am impatient in trying to reduce,the worse side effects is shortness of breath even just walking up the garden, I used to do all the gardening now none. Most of what I feel is frustration. As I said have Drs app. next week so hoping he will help.

[DorsetLady PMRGCAuk volunteer in reply to kathyrob]

Yes we all suffer from frustration. But it’s not just PMR.

My GCA is now in remission, but I have rampant arthritis and I just spent (what seemed like hours!) trying to get the salt reservoir top of a dishwasher delivered this morning. Of course if I’d been switch on I’d have asked the delivery guy to do it, but never thought!

After being on hand and knees (not good) and stretching into machine - why do they always put these things near the back! - I’ve done it. Not without a fair amount of bad language - so now I’m sitting down having a cuppa (too early for wine) and a Kit-Kat (other chocolate bars are available) and a hot water bottle for the bits that ache!

Hope you get something good from Doctor.

[SheffieldJane in reply to DorsetLady]

👏👏👏👏👏👏💐

[teesher in reply to DorsetLady]

LOL. I never have got the hang of the salt thing.

[DorsetLady PMRGCAuk volunteer in reply to teesher]

Unfortunately we live in a hard water area - all those dinosaurs’ 🦕 bones! So it’s something need to be aware of - kettle’s the worst always seem to be descaling the damn thing!

Going to use dishwasher later! Little things! 😏

[PMRpro Ambassador in reply to DorsetLady]

I don't use salt, I use combined tablets - much easier albeit a bit more expensive perhaps. And when it comes to hardwater areas - I suspect the Dolomites probably comes high up the list!!!!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes, but as it’s brand new - replaced under the extended warranty, you need to fill reservoir with water and salt initially. I use the combined tablets as well, but these brand new machines are a bit persnickety!

Still it works, no more standing at the sink hand washing up!

[PMRpro Ambassador in reply to kathyrob]

The breathlessness is also common with PMR where the inflammation is not fully under controlled - your muscles are struggling to do what you are asking and, like any over-exercise, it makes you out of breath.

[SheffieldJane]

Hi kathyrob, Getting off steroids is all we all want. Unfortunately the median time for which people have PMR, according to the latest research is 5.9 years. I think that means half are less time and half are more. Very, very few people are 2 years or less. The aim with tapering Pred is to gradually get down to the lowest possible dose that you are comfortable at. You have come down to a low, but relatively challenging dose in less than a year. I am not surprised that you still have symptoms. It has taken me from March 2016 until now to reach 7 mg using the dead slow nearly stop method of tapering. I have done this with no flares and few symptoms. I worry about the danger of unchecked inflammation more than steroid side effects and the latest research shared on here supports this view. Your blood tests will almost always be clear if you are on steroids. Some people’s are clear throughout the disease, which is odd but true.

Only you know how you are feeling. A race to zero is likely to cause a flare and send to right back to your early degree of symptoms. I hope your Rheumatologist is interested in PMR and not one of those who dismiss it as an “ old person’s disease” and under treat it. If my symptoms were increasing I would want to take more Pred to control them sooner rather than later. There are possibly mild, reactive types of PMR symptoms that may go quickly. Only you know how you feel. Let us know how the Rheumatologist appointment goes and how you are in yourself.

Are you experiencing side effects from Pred.?

[kathyrob in reply to SheffieldJane]

Thank you all for advice I get so frustrated not being able to do things I have always done. Shortness of breath is the main problem I know it has raised blood pressure for which I am treated,mood swings too. Don't see rheumatologist until July.

[piglette in reply to kathyrob]

Hi Kathy, PMR is life changing and so it is a great opportunity to find new things we can do. I must admit I have started to pamper myself which is extremely pleasant with pedicures, massages, smelly soaps etc. I have also learnt to slow down as I was like a whirling Dervish before. I still swim etc but I just take it more easily and stop rather than fighting it if I get tired.

[SheffieldJane in reply to kathyrob]

Shortness of breath is something that comes and goes for me. I am on Atenolol for raised blood pressure. Last summer I had a bedside fan blowing in my face all night which helped, as did an extra,high quality pillow. It seemed to bother me at night or going uphill.

The mood swings are a trial. I can be very irritable, depressed and euphoric in the space of 10 minutes. If I remember in time that it’s the illness and the drugs not me, I can avoid falling down a hole. The “ down” feelings tend to mean I am tired, so I take a nap and wake in another headspace usually. The irritability is reminiscent of Pre- menstrual tension, it seems to coincide with a particular headache with me. I don’t mind the little moments of blistering happiness one bit.

[Hidden in reply to kathyrob]

I am afraid the more you fight it the worse it feels. The first year and a bit of PMR on higher doses I was terribly breathless. Couldn't breathe sitting down sometimes. I think it's a combination of things. The pmr itself, the pred which in turn can cause weight gain and weight that shifts about. I had a fat lump basically on top of my diaphragm. If I bent to do shoes up even string doing it I could breathe. I have gone on a low carb diet which has started to help shift fat away from that area.

Regarding pred. I reduced to 8 during first 8 months or so and flared. I hadn't found the forum then so didn't know what was going on. I ended up back at 15mg for months until things settled again. I am just going from 9mg to 8mg using Dsns method. So far so good but last few blood tests have shown markers creeping up. More blood test next week. You need to consider an effective taper method. I use dead slow one as it reduces steroid withdrawal for me but is flexible and can be adapted when a flare starts....that usually after 2 weeks if reduction.

In the end you can't wish it away. Your immune system is attacking you. The pred is just stopping that attack hurting quite so much. Open the door for it slightly and it will attack again. Hope all goes well.

[Hidden]

Hi kathyrob, I so get that you just want to get off steroids!!!! I have been on them now for 166 days! I started at 40, went to 60, dropped to 45 (too quickly), had to go up to 80 and I am now on 45 and reducing, slowing (5mg a month).

I hate steroids too, but shouldn't your ultimate goal be to feel better? To reduce the pain in your hips and neck? To get some normalcy back in your life.

I was like you.. I just wanted off steroids, but I paid a huge price for that! I ended up on higher doses of steroids for a longer period of time. I have GCA as well as PMR so I'm comparing "apples and oranges," but please give yourself time to heal and let the inflammation in your body subside.

Patience and rest is the best advice I can you.

[kathyrob in reply to Hidden]

Thank you for understanding, it's hard for people who don't have this disease to understand your pain and frustration.I probably have reduced too quickly that's why I need to speak to Dr. I don't like putting dose up until I have spoken to him. I know he can't feel what I can but hopefully some advice.

[CT-5012]

Please listen to the advice given above we have either or both PMR \GCA your doc doesn’t. Recent research shows that the dose of pred we are taking is no greater risk than that in the general population except for developing cataracts. So no major panic to reduce to zero. All good wishes for an easy ride down this road. Patience and REST.

[suzy1959]

I am disgusted that you have had to wait so long for a Rheumy appt. Am I right in thinking it will have been a whole year? That is unacceptable for the very reasons that you have posted this question- you need help in how to manage this condition.

I really hope you get a good Rheumy who understands PMR. There is always the possibility of paying for a private consultation ( even as a one-off) now and getting the help sooner as long as you see the right person. Ask on here if you need a recommendation.

[kathyrob in reply to suzy1959]

Thank you for your kind concern yes it will be a year since diagnosis. I tried getting help through PALS at hospital but they didn't help either. I will be seeing a different Dr next week so hope for some advice then. Will keep you all posted as I have had more help with forums than anyone else. Perhaps they think if they leave it long enough I wont need them as I am in my seventies.Thanks again.

[Hidden in reply to kathyrob]

I wasn't referred to rheumy for just under a year. The GP was happy treating me until my markers went back up and I was considered "atypical". I was 55 then.rheumy dismissed my concerns about breathlessness. Now I am glad as it's gone unless I eat a couple of days of carbs.

It's really hard feeling breatjless and worrying if something sinister is happening. My rheumy automatically did chest x-rays and a bug raft of blood test for lupus RA etc.perhaps the clear xrays were why he was dismissive about breathlessness. Good luck and fingers tightly crossed that you get the answers and support you seek🌻

[ClarkB]

My Polymyalgia Rheumatica appeared overnight, in December 2017. I was unable to lift my arm and very painful. I had a blood test and the reading was very high. My dr didn’t want to prescribe steroids without a Rheumatologist opinion. Was put on the Urgent to see list, but the appointment came through for the end of March this year. I felt I couldn’t wait that long, so saw a Rheumatologist privately within three days! It was worth it for treatment and peace of mind.

I would recommend anyone undiagnosed seeing one privately if you can, as you are given the time, early diagnosis, and follow up advice. One can’t depend on being seen quickly on the NHS anymore because of the sheer numbers awaiting consultations. I was diagnosed with Polymyalgia and immediately put me on a 15mg dose of steroids, which I have to reduce by I mg a month. It has tended to dominate my life, because I am an anxious person and I think my anxiety tends to make things worse. With headaches and double vision I assumed I had GCA and dwelt on it. This doesn’t appear to be the case, but I had an eye test and was told that steroids could cause the cataract and double vision. I have fatigue and other symptoms which you and other people mention. I also had osteoporosis anyway which steroids don’t help, and am reluctant to take additional medication for this. With other conditions as well, it is difficult what to attribute to these, or side effects from steroids or simply anxiety! I hadn’t even heard of Polymyalgia until it struck! I received some consolation from a neighbour who had it a few years ago. She is in her eighties and as fit as a fiddle. Another person manages it on a low dose, and accepts the occasional headache. It’s still early days for me, so can only follow current advice!

[Rugger]

Hi Kathyrob,

I know it's no consolation, but I didn't see a Rheumatologist until 14 months after I was diagnosed. My GP and I, with information I gathered from this forum, managed my PMR and continue to do so. Rheumy appointments may be only every 6 months or so for a quick check up. My GP checks my blood every couple of months, or more often if my symptoms worsen - symptoms are key. Our GPs are there for us when we need them - well, you know what I mean.

In spite of all I've learned here, I've had 2 flares - one a year after diagnosis and another 9 months later. Each time I'm sure I tapered below the amount of pred I needed to control the inflammation. I'm just coming out of the latest flare and this time I will taper even more slowly. I was doing DSNS taper at 0.5mg per 26 days - I'll do it over a longer period this time.

You have reduced to 7mg fairly quickly and if you're getting pain in your neck and hips, it sounds rather like you are not on enough pred to control the inflammation. You are the best judge of what's going on in your body - no GP or Rheumy can measure your pain and know how much pred will take it away.

If you want to see a variety of tapering regimes, click on 'Tapering steroids' in the Topics section of this page and scroll down to see a 'Steroid Taper Web App', which has many examples of tapers, including the DSNS (Dead Slow Nearly Stop).

Me: PMR 23 months. One flare at 12 months and another recent flare. Lowest pred 4mg, now on 8mg.

[Maryis80]

This is the first mention I have seen of breathlessness, which has been my problem for the last couple of months, walking upstairs, making the bed, bending to get something out of a cupboard etc. Told GP and she said if it goes on will do an ECG. She also put my Pred up to 30mg, now reduced to 25 as blood reading was high, I started at 20mg last May and did get down to 12.5 before having to go up again. Latest problem is pain at the back of my knee first thing in morning or after sitting for a time, though I stood all morning serving in a charity shop yesterday with no pain at all! At a recent meeting of the local PMR group, it appeared that everyone present was receiving different messages re treatment from their GPs/consultants, who does one believe?

[kathyrob in reply to Maryis80]

I had the breathlessness since started steroids. I've had ecg and heartscan both ok. I went for chest xray too . I get same as you climbing stairs,bending down or any sort of exertion. Still get lots of pain in neck hips etc that's why I have Dr app. next week for advice had a lot of help on this forum and the other one I watch. It amazes me how many suffer with this dreaded disease. Not heard of til I was diagnosed. I wish you well.

[Hidden in reply to kathyrob]

Hi Mary & Kathy

I was very breathless & short of breath when I was at 20mg

I could barely bend down, walk upstairs & l certainly couldn’t walk & talk at the same time & had to sleep sitting up.

It really frightened me, l had to use a lift if we were in shops, had airport assistance when we traveled & a couple of times left M&S in the complimentary wheelchair.

I had blood tests, a Chest X-ray, and an ECG my pulse was very fast, 100bpm resting!

GP thought l had heart failure & sent me for an Urgent Second Opinion to a different Rheumatologist & she started me on Methotrexate as a steroid sparer to try & help me reduce the Prednisolone; I had an One Hour Fourty Minute Consultation on the NHS of which l was more than impressed!

I was like that for the best part of a year maybe longer as l reduced from 20mg downwards.

My Very Best Wishes

Mrs N 💅🏼

[SandraMW99 in reply to Maryis80]

Hello I've not been in this group long and just waiting for diagnosis. I'm a very fit 61 year old but hit by multiple joint pains and stiffness rather suddenly a few weeks back. Dr has put in a 'rapid access request' for rheumatologist appt. But, one of my problems was the awful stiffness behind both knees. Particularly in the morning or after resting. Self diagnosis is not always a good thing but I discovered Bakers Cysts which are common with RA. So maybe that's causing this problem? My GP has given me a week of steroids as she recognised I was in a bad way just to give me some relief before the consultation which will hopefully be in a week or so. I'm on 20mg since Friday and the improvement is amazing! Good luck.

[mega]

I'm somewhat in the same boat, kathyrob.

I have been on steroids for 7 years , bar a week or two, and had a 'light-bulb' moment a couple of months ago when, after a meeting with a rheumatologist in Aug '17 it was suggested I should try reducing by one tablet every few weeks. I was on a dose of 5 per day BUT they were 5mgs tabs and I, in my brainfog, began reducing by 5mgs per fortnight - one tab. per fortnight but was in fact 5 per fortnight!

I'd had a previous appt. in the summer of '17 and saw a nurse who asked me what I considered irrevelant questions - "Could I get out of a chair without feeling all creakie-weeky"!! Depends on the chair, I replied.

"Was I suffering any joint pain still"? No, but then I rarely have.

It wasn't until I had a copy letter to my GP that I realised she had me down as suffering from PMR and not GCA! She also had my steroid dose different from what I had told her.

I had another appt. in November (?) when an assistant to the rheumy had advised me to reduce by one mg wrote to my GP saying I should INCREASE by that amount.

My next appt. was early Jan which was cancelled and substituted with 30th Apr. I had a letter this week cancelling that until sometime in June.

Meantime, I have become housebound, have had three falls which have stripped the skin from my forearms and my surgery has descended into mayhem - a month for an appt. with either a GP or a nurse. My 'own' doc left in October and I know nothing of the new, part-time influx of women GPs - or them of me! I have been reliant on the District Nurses (who are so kind, male and female) for dressing my arms but am now reduced to no medical support at all. Enquiring at the surgery when I may expect a replacement 'personal' doc as promised by Hunt I was told they had been unable to recruit anyone to fill the vacancy. Maybe they've heard about me!! Whoever was overseeing, had my single 1mg steroids removed from my prescription, without reference to me.

I also know I have water retention and have now started with leaking legs which my DiL, who has experience of nursing the elderly, says is very likely vasculitis. Here we go again.

I'm sorry to inflict such a rant on you all; I'm sure there are many of you who are in a worse boat than I am and I sincerely wish you all better times ahead. Especially those on their own and in pain.

[Hidden in reply to mega]

Its a necessary rant and I want to rant for you!!

Please, please ring and ask for a home visit. You should complain to the practice manager. You have an illness and treatment that should be monitored. You shouldn't be leaking fluids and should certainly have better treatment. I am sorry and disgusted that you are being left to effectively cope alone. Please let us know if you get further forward. It is so hard to feel ill and be in pain alone. So please ring and ask for a home visit - there must be a policy in place for that 🌻🌻🌻