Hello I’m back on line again. I don’t know why I’ve been absent for so long as this forum not only improves my outlook on PMR but gives me something interesting and educational to read.
At the moment I am in rented accommodation due to the floods in Yorkshire. That didn’t help my sore hip and groin carting all the things we could save upstairs then moving things we needed to the other house. There was a lot of walking to be done too finding and viewing a place whilst living in a hotel.
This was the second time in twelve years we’ve been flooded and it was very traumatic. We are no where near a flood zone. The drains once more failed. The measures put in place last time saved the people worst hit before but it wasn’t enough for us few in our area. There were about 20 houses near me caught up in it and a lot of people were not insured due to a clause in the last page of of very large policy. I should be thankful Parker is very pedantic on policy documents. The insurance company are only paying out for damaged goods as they were stung last time by people over claiming for things they didn’t loose. That means for me just the bottom half of a fitted kitchen!!!! We have to keep the top cupboards or pay for them to match the bottom!!!! Grrrrrr!!! Couldn’t get any worse till they found a gas leak and stopped all works till that’s sorted. Which, as it’s pre existing is all down to us to pay for.
So I am at the doctors trying to get him to diagnose my hip and groin pain. He doesn’t know nor care I’m a stressed out floody with a gormless uncaring insurance assessor. After a very assertive discussion he gets me an appointment at Orthopeadics. The consultant diagnosed bursitis quite common after hip surgery. I went for an ultrasound guided cortisone injection and an appointment was made to see my hip surgeon just to check that was all ok.
The injection didn’t work. The hip surgeon said up the pred it will sort out the bursitis. The hip is sound.
He asked who managed my PMR and I said me. I explained the doctor just prescribes the pred and I am reducing it down slowly. I was on 5mg. He said the doctor needs to find you a steroid sparing med after 4 years? I said one doctor doesn’t think I have PMR because nothing shows up in my blood test. He then asked who my Rheumatologist was I said never had one. I was referred when first diagnosed but the Rheumatologist at that time did not think I would benefit from an appointment. So the Orthopeadics consultant made another referral to the Rheumatologist and also wrote to my doctor.
Upping the pred worked on the hip. I still haven’t had any contact from the doctor. Not heard anything from Rheumatology but have made my own appointment for the 29th Jan with the doctor.
Up to 10mg now I have excessive sweating all the time if I move eat drink or try to sleep. Never had the sweating when I first started on 20mg pred? You would think that with all the things pred does over time some one would really like to keep an eye on it rather than me self medicating. That’s going to cost more in the long run surely?
So in conclusion if you got this far reading my story:
If you’ve had Bursitis and how did you manage?
Does anyone else sweat profusely? My hair is soaked like I’ve had a shower and it’s more clammy than sweating on the skin. Sweat runs down my face.
Should I reduce the pred again slowly after 4 weeks? Or is it too soon?
If I do too much the pain comes back till I do nothing for a few hours though. Even in 10mg
Any other options out there that work?
Steroid sparer? What’s the drug called?
I can go to my appointment then forearmed.
Thanks for reading any comments are welcomed.
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Estellemac
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Well we don't really need to ask what's going on do we? PMR exaccerbated by stress and overactivity of the wrong sort!!!
You need a rheumy who doesn't believe the 2 year PMR story and is willing to accept if you don't want steroid-sparing meds or will allow you to try them and stop if they don't suit you.
Lefunomide and methotrexate are the two most likely options - lefunomide works for some and they even get off pred. Methotrexate works for some to reduce the dose but rarely seems to achieve a replacement for pred. Adverse effects are the limiting factors for both.
You do need to get the inflammation under control before reducing too much.
So sorry to hear of everything that’s happened to you. I’ve also had a lot of hip pain. My provider sent me to physical therapy and that has helped tremendously, though it has taken many visits and exercising at home faithfully 2 and 3 times a day. I ended up going up on the prednisone because of life’s stresses, but now back down to 3mg and the sweating has let up. Not sure if that has anything to do with it. Sure hope thing begin to settle down for you. maryanne 🌻
I must do the physio at home. I’m in an “I can’t” phase I think. I should know it works. Thing is it wasn’t optional to do things when we were flooded. I must say I was tired and lived on painkillers but next day if I did a bit less I was ok. I think I can I think I can! said Thomas the Tank Engine.
I know, I have a hard time sticking to the plan at times too , there’s always something that needs to be tended to first, then at the end of day I’m totally worn out! It’s hard to put ourselves first. Think that how we ended up with this PMR in the first place. Thinking of you and welcome back. maryanne🌻
I would sleep better I reckon if I made more of an effort. I did today. 👍
Hi, it could be the pmr flare that's making you sweat. I seem to be having the same night sweats as I did pre dx. At least you know it was inflammation now. Thank goodness Parker is pedantic.... Half kitchen replaced us better than none. I suspect that some of the work they have done to prevent floods in the usual areas has caused issues further up and downstream on the plains. I remember the last floods and had friends caught up in them in terms of homes and businesses. I live a few hundred yards from where a poor man in his car was swept away. Very sad. It is a very stressful time and the fact you are nor fully sorted is just ramping it up. Anxiety can up the sweaty Betty's too. Let's hope things are sorted, your pmr controlled the the rheumy not a numpty. 🤗
You know some people in Fishlake had to have their bungalows demolished. They were older or infirm too. So I am lucky. At least I have a house to go back to.
Parker said the same half a kitchen is better than nowt. We had too much tat anyway? Thing it it was his tat. We went from Man Draw. To Man Shelf. Expanding in to Man Cupboards.
I do think the Sweaty Betty is the pred. I’ll give it a bit longer then reduce slowly. When I was on 5 pred I was really pleased. PMR just presented itself somewhere else to test me. Thanks for your reply xxxx
Those poor people. Make sure they stick all your plugs up higher... Good for you and water (I have fingers and toes crossed it doesn't happen again).. It was biblical rain when it happened.
Glad to hear a bit about Parker again... The tales of his exploits and how pmr effected both your lives helped me in the first couple of years I had pmr.
I have just got a 3tog quilt to help and have my fan at the side of the bed. Xx
We had to buy a bed as we couldn't get ours in the place were at. It’s a double!!! My precious king size with individual quilts awaits me when we return. That’s if the Gasman doesn’t condemn anything else like the boiler as well as invisible leak we have holding up reparations. I am now thinking there may be a plague of Frogs next.
As the others have said, it's hardly surprising that something's had to give.
A year after my PMR was diagnosed, it flared as bursitis in my hips. I had to increase the pred from 4mg to 10mg and stayed at that dose for 5 weeks, then 6 weeks on 9mg and 3 weeks on 8mg, before starting the DSNS taper at 0.5mg / month. I know we're all different, but that gives you an idea.
I've had to go back up to 10mg recently, for something I'll post about after I've seen my Rheumatologist. However, I am sweating too - hair sticking to forehead and back of neck and clammy all over at times. I did some very gentle pruning in the garden before Christmas and sweat was running down my face into my eyes - something which would never have happened before PMR & pred, even after a few hours vigorous gardening! I think it's the pred, as my inflammation levels are under control on the 10mg.
I am going to wait another two weeks at 10mg the reduce by half over a few weeks till I get to a manageable dose. Got to see if methotrexate or lefulmonide works too. I should have remembered our previous discussions. I was really hoping it was not more PMR with different symptoms.
It is surprising how much better I feel reading this. I do see a light at the end of the tunnel now. I feel I need to move more to get better. Then sulk cos I’ve done too much and feel like a wet dishcloth.
As for Parker!!!! He stands in the back ground muttering instructions for me to give to the contractors as he can’t talk to to them being a weirdo that he is. Then he whinges cos it wasn’t verbatim! It all comes back by email in writing anyway.
I now take your lead and will not engage in conversation with Parker till after works are agreed. Wouldn’t mind but he’s never ever been interested in home design or even matching floors walls and blinds. It’s really just about does it come in under the insurance?? I don’t care. He somehow thinks we need money to live on too now I don’t work? If I have a plastic card then I have MONEY! Simples.
I'm so sorry you're going through all this. I've been feeling sorry for myself today because the squirrels have evidently found or made themselves a new route into my loft. They were up there scampering merrily over my head at 3 o'clock this morning. This has been an on-going battle since I moved here 9 years ago, although the last work that was done kept them outside for nearly 3 years - I finished with the squirrels just as I went down with GCA then PMR! Maybe they'll go away now the squirrels are back - I can dream... Anyway your story helps me put my troubles into perspective.
I live on a hill in a second floor flat so it would take rain on a biblical scale for me to be flooded. However I had a work colleague who lived in Lewes and went through a long ordeal when their floods occurred a few years ago. I do think the government has to grasp the nettle and implement a comprehensive flood policy for the whole country.
I've taken methotrexate as a steroid sparer for two years and haven't had any problems that I know about. I have my blood tested every month for liver and kidney function and the results have always been satisfactory. I can't be 100% certain but I think it has helped me to reduce my pred dosage.
My daughter has just had squirrels in her roof space - damage to the gable end to blame. But as it is a flat we have to get the maintenance company to pull their digits out! And that is like getting blood out of a stone ... But the nice pest man did a brilliant job
How do you stop them from coming back? That’s the secret we need to know. I’ll probably have a colony of endangered species bats next. But I am trying to stay positive.
It's seemingly impossible to stop them coming back, although George Monbiot says that grey squirrels scarper when pine martens are introduced. I can't imagine persuading a pine marten into the loft. I've a feeling that cutting back a particular tree would help to some extent, but I'm torn as I like to watch the birds in it from my bedroom window.
I think if the main bit of the tree is less than 10ft away they will easily hop across. I put wire wool in every hole I could find for mice. These cheeky creatures can both run up brick walls and squirrels are habitual. Know anyone with a ferret?
Bear in mind they (squirrels that is) tend to travel in pairs! He'd taken away the first and she had to ring him almost before he'd got home an hour away to tell him there was another in the trap!!
It’s worth trying methotrexate or the lefumonide PMRpro said. I just hope the doctor goes with it and doesn’t think I’ve just googled a cure. But I will take literature to back it up just in case. Thanks.
Squirrels are lovely but if you had Rats they would be considered vermin and a pest. Some people even keep Rats as pets. The white ones more so than the feral ones. It must cost a fair bit to Squirrel proof the house too. Then the clattering through the voids like they’ve got clogs on and are tap dancing!! We all have a battle with something others don’t really understand. At least this place is pest free and 🤫 very quiet.
Firstly - it was lovely to see you back talking to us and appalling to hear about the massive stressors you’ve been subject to - just dreadful! Poor you and Parker, an utter nightmare!
I have no personal experience of bursitis although my worst early symptom of PMR was crippling groin pain - I shuffled along bent over like I was 120 years old. Pred zapped it within 2 days.
I have had the uncomfortable and embarrassing sweating symptom on and off for the duration of my PMR. It still happens a bit but much less on 4 mgs. I can remember being at a playgroup with my baby grandson, literally dripping away - so embarrassing, I was on 10 mgs then. I just pretended it was the menopause because he made me look younger. In bed, I love a fan in front of my open window, blowing on my face - even in this weather. We also discussed those scarfs you can wet to activate cooling crystals, and put round your neck ( Amazon). There have been a few posts about this problem, it’s probably worth a search. I would wait a bit longer before tapering and maybe even consider more. You know how PMR feeds on stress.
Methotrexate is probably the steroid sparer you are thinking of. Mrs Nails has written quite a few helpful posts about it.
Your best friend will be rest, rest, rest, if you can just peel yourself off the ceiling. Stick with us, we’ve missed you!
I never thought of Amazon for cooling crystals scarves? I will look through a few old post from Mrs Nails too.
All this time I have been on here until these “new” symptoms sweating and the pain in my hip and groin I couldn’t relate it to PMR? I really thought my operation had gone wrong. It felt just the same as before the hip surgery. Rugger had said before she had the bursitis pain same as me. I think I was a bit blinkered?
My goodness you're dealing with so much stress no wonder PMR has flared.
Hip bursitis wasn't a symptom of a flare for me until the 3rd year of my currently 5+ years with PMR. However, I did get it on occasion and was able to deal with it using ice packs and exercises (there's loads to be found on the internet).
Now that I know it can also be a sign of a flare, I still treat it the same way unless more of my typical flare symptoms appear and worsen, then I know it's a flare.
Best of luck to you in all things flood and PMR related. Take time to take care of yourself.
Hi, good to have you back though sorry to hear of the the ongoing flooding hassles. I've had bursitis in the past and it was successfully treated both times with local steroid injections. I've had horrendous pain in hips and pelvis for months, worse on waking. GP says not bursitis but classic PMR symptom, but I've never had it before in 8 years. Yet even when recently on 40 Pred for suspected GCA (luckily it wasn't) I still had problems, the pain didn't go away on high Pred. Rheumy sent me for an x-ray last week but am I right in thinking that would only show problems with bones, not inflammation?
Yep inflammation isnt shown on X-ray and blood test might not show it especially when your on Pred. But I thought that it can be detected with an Ultrasound?
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