Severe buttock and thigh pain whenever I reduce my steroid dose

[missrat]

In April I was having primarily buttock and thigh pain and stiffness, plus a little shoulder pain and stiffness. At that point the pain sometimes made it hard to turn over in bed. I was put on 15mg of prednisolone and the pain went within a couple of days, although my inflammatory markers were normal. Hip x-rays (I have had two hip replacements) were normal.

My rheumatologist put me on azathioprine and I have been reducing my steroids by half to one mg every fortnight. I', currently on 9.5mg. However, I find that the pain recurs even on 12.5mg. I'd really like to go back on 15mg - or even slightly higher, to see if the pain eases, and then start slow reduction again. Although I'm not having pain in bed now, I'm having very severe pain in my buttocks and thighs when walking or sitting. Presumably if it doesn't respond to the higher dosage they will query the diagnosis. Unfortunately I'm one of those awkward patients who gets almost no relief from even narcotic analgesics. I am wondering if a referral to the pain clinic - which I have already been under for back problems - might help.

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[venezia1]

Hi Missrat

I do so sympathise. I have had RA for four years, and GCA for sixteen months, starting on 70mg steroids. The pain I've had in my hips has been so awful I was eventually given an MRI scan, which showed I had no cartilege at all in my right hip and not much in my left. I'm down for a hip replacement hopefully in a couple of months. Problem is, although I'm down to alternate days 15/13.5.mg steroids, they won't operate till I'm down to 10mg, and I don't know how long that's going to take. Today I've just had to go back to 15 as I feel so rotten. I'm also on an opiate/morphine painkiller, which is having no effect at all! I too have wondered whether it might be worthwhile to go to the pain clinic.

I'm also on 20mg Methotrexate, but any benefit is masked by the hip pain, unfortumately.

Sorry this has turned into a moan about me, when I wanted to say hang in there!

venezia1

[missrat in reply to venezia1]

I hope that you can get low enough for hip replacements - mine have been brilliant. This pain is totally different from the arthritis pain. Recovery after hip replacement was amazingly quick.

[trish29 in reply to venezia1]

Hi Venezia1 and missrat I sympathise with you both with your pain levels. I am reducing on the prednisolone 14mg/13.05 mg alternate days , but when I go to 15mg or above the pain eases . I definitely get pain in the buttocks and worse in my upper arms and my spine is awful pain. I so want to be down to 12 or 12.o5mg before I see my Rheumy in December but my body doesn't like coming down at all. I see my Gp tomorrow and will ask if I can have a Dexa or MRI scan .What a lot we all go through suffering differently . I hope things improve for you both. trish29

[lynabelle in reply to trish29]

I am now down to 11mg and the hip pain is aweful I can hardly walk, as everyone else has said 15mg seems to be the magic number but rhemy insists that I get down to 7.5. Talking of dexa scans, I have asked both rhemy and doctor and I can't seem to get one its really frustrating

[trish29 in reply to lynabelle]

Hello lynabelle its nice to hear from you again . I know what you mean about not being able to walk and trying to get jobs done and cope with the pain is awful. I've just come for a rest so as I can get to my GP this afternoon . I am on 13.05mg pred today but I know my pain level will be unbearable later. Reading some of the posts it appears that some people can get scans quite easily and others can't get one at all. I am going to ask anyway!! I have another bloodshot eye and I had one last week as well and it must happen for a reason..I was very tempted to take 15mg steroid this morning but I stayed strong and took the lower dose. Do you have to get down to 7.05mg by a certain time. Mine and my Rheumy's challenge is to be down to 10mg steroid by the 19th December but there's no real pressure and I think it's more likely to be around 12mg. Thinking of you and what we go through with this horrible condition . I know I am very snappy at the moment and just want to get on with my life the way it was before PMR . Housework and every day tasks are so hard to cope with but I remember all the people that find time to reply to the posts and know we are not alone and they are going through the same thing.. take care and take it steady with your reducing . Pat. ( Trish 29)

[lynabelle in reply to trish29]

No time scale trish , just 1mg every 2 weeks , but sometimes I go 3 weeks until I feel able to go down one, went down to 11 mg on Monday and I can hardly walk today and I know what you mean by tasks are hard , near on impossible today think I will just go back to bed

[trish29 in reply to lynabelle]

Take care lynabelle and keep in touch .. I am supposed to decrease half a mg every fortnight but sometimes I stretch it a bit longer . We know that getting plenty of rest is the only way to ease the pain level. Just off to see the Doctor.Here's hoping I get some advice !! trish29

[Celtic PMRGCAuk volunteer in reply to lynabelle]

Lynabelle

It sounds as though reducing by 1mg every two weeks is too fast for you at this stage. You could perhaps try going back to 12 for a couple of weeks to see if your pain eases, then try either reducing by just half a mg or by 1mg on just one day of the week, increasing it to 2 days the following week if you feel comfortable.

[trish29 in reply to lynabelle]

Hello again lynabelle I hope you are feeling better and that your pain level eased off to make your day easier. I had a good meeting with my GP and he is sending me for an x-ray on my spine to check what's going on re osteoarthritis or if it is PMR related. I have to up the painkillers . He's happy with the steroid reduction and I can slow down if I need to. We shouldn't have to cope with the awful pain. I see him again in 3 weeks. Take care and I hope things settle down for you. trish29

[lynabelle in reply to trish29]

Thank goodness you have an understanding doctor, I have asked my doctor and rhemy and they both say its too early (a year on steroids) to have a dexa scan, I have osteoarthritis in my right knee and my hips are painful when I walk, I have CBT counselling for my depression and I have to walk there as I am only on lower rate disability allowance and can't get a bus pass and money is tight with only one person working in the household, and they wonder why I am depressed? I am always bad the first week I drop and then it gets a little easier the second week and sometimes I have to go to the third week before I feel slightly more normal. I have a esa meeting with atos on 9th October so wish me luck on that one, I want to go to work but never know what I am going to be like from one day to the other .....so frustrating ,sorry rant over

[trish29 in reply to lynabelle]

Morning lynabelle. rant as much as you want as I understand . I have had over a year of trying to get on an even keel with a medical team. It took a very bad flare- up in January to get with a different GP who has other PMR patients and he got me with a new Rheumatologist who is very understanding after my previous one just didn't seem to have patience with PMR.. I worked for the first year or so with this condition and found it very hard and I've been retired 7 years now. I have been so low lately due to not being able to walk re lower spine ,knee and legs that I said I wanted to go in a home or sheltered housing but my partner won't hear of it . I know we are given steroids to help our condition but no-one warns us of the difficulty of getting off them. Good luck with your meeting on the 9th October and keep in touch trish29

[lynabelle in reply to trish29]

Thanks trish , I wish I was retired then I would not have to go to stupid atos meetings ,I will let you know how it goes, and chin up do as much or as little as you can i am thinking about getting a second hand wheelchair so that I can be pushed round on really bad days at least we can get out the house then if you need a rant I am always here x x

[trish29 in reply to lynabelle]

Hi lynabelle don't go back to work until your body let's you .. There must be more advice out there now !! CAB gave me a lot of advice when it was difficult to go to work.. Good idea on the wheelchair but how about a small mobility scooter ? Mine gives me a lot of freedom when my energy levels allow.. My partner has just bought me a 4wheel mobility walker this morning with a seat .I think it will give me more support than my walking stick . I must try and keep my legs moving as my weight is just going up and up . My spine x-ray is next Weds morning so we will see where I go from there. Keep in touch when you want to rant. trish29

[Bell4796 in reply to lynabelle]

Hi Lynabelle,have you had your hips checked ask had the same problem with the buttock and thy pain, and now have 2 new hips due to the steroids causing damage to the bones , just a thought.

[lynabelle]

Can't afford a scooter or wheelchair and I am only on lower rate disability allowance so can't even get a buss pass oh well I just have to do what I can

[Celtic PMRGCAuk volunteer in reply to lynabelle]

Lynabelle

I had the loan of a wheelchair from a local Red Cross outlet at no cost, just a voluntary small donation when I returned it. If there is a branch local to you, perhaps you could make some enquiries.

[jinasc]

Most areas have a #mobility shop where you can hire long term a scooter for about £5 per week. Ring your Adult Social Services at your Council. They will have all the information.

[missrat]

I'm sorry things are so hard for you. lynnbelle, and hope you can hire s scooter.

My GP let me increase my steroids, and the pain has been very slight today. I'll cut them back as quickly as I can without increasing the pain.

Ann

[lynabelle]

Thanks everyone I will contact social services, the pain in my hips is even there when sitting down , I was never diagnosed with pmr just gca but the pain in my hips has definatly got worse as I have come down on steroids, I am not going to go back up again until I have seen the rheumatologist in October , mentally I feel much brighter and I am going for counselling once a week .

Love this blog and all you fantastic people you have all helped me through such a lot and I thank you

[Marcy47]

I have been reducing slowly from 10 to 9.5 Pred. Now on my 1st full week of 9.5 and I am getting pain in left thigh and buttock when in bed and after sitting, it eases after walking for a while. I realised at 4am this morning that I had forgotten to take my Pred at 11pm the night before, so got up and took it then.!