Firstly I must apologise for misleading PMR victims by posting in the first person as “Yorkie2”- my long suffering wife. My desire was to find some relief for my wife who has endured PMR for approximately four years in which she experienced immediate benefit from a starter dose of 30mg of pred and reduced to 20mg but developed a full moon face along with most of the known pred side effects - multiple falls caused fractures to 4 Ribs, Wrist, 6 Six Upper Front Teeth and a 30% compression fracture of a Lumbar Vertebrae plus significant loss of hair.
Initially I stated that tapering had been carried out down to 5mg but I made an error, 10mg was the lowest but reverted to 12.5 with still no relief and constant flares persisted.
A GP referral to an orthopaedic surgeon resulted in a recent Dexascan which revealed some osteoporosis and osteopenia but not serious when compared to persons in a similar age group, however the spinal damage has left the neck susceptible to serious consequence should further falls occur.
The surgeon considered it essential that pain relief was the first objective, together with the elimination of Pred. The approach is to use 12.5 mg opiate patches applied to the skin with three day replacement, simultaneously tapering the pred, which is now 10mg
Yorkie2 is still doing her damnedest to contend with the constant pain and discomfort which is so well known to members of Healthunlocked - so again I write on her behalf to share her trials hoping that maybe someone may have helpful comments to add.
As a woman her self esteem is taking a hell of a battering, constantly trying different hair treatments and styles are managed very well but concealing the terrible appearance of her legs causes her much anguish, finding suitable creams or ointments to cover the scars is a problem.
I attach photos of her latest scar which was caused by lightly bumping against a door - the profuse bleeding which follows such damage is difficult to stem and suitably dress.
My frequent visits to the site make me very aware of the suffering inflicted by PMR and what is endured by the extremely unlucky patients. I am also aware of the powerful sense of community and mutual aid and assistance which exists in the community and wish to thank all the people who contribute. The level of expertise demonstrated in the”posts”is amazing and very reassuring.
Sincerely,
Yorkie2’s Other Half
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Yorkie2
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Sorry to hear your tale of woe - it's a difficult problem.
If what she has really is PMR - opiate patches won't deal with the pain. That's a simple statement. But if she is having this much difficulty reducing - has the surgeon consulted with a rheumatologist as to whether maybe there is another problem besides or rather than PMR?
A better option if it is possible might be tocilizumab/Actemra. Although if you are in the UK that would complicate things.
Thank you for your constructive feedback PMRpro. My wife is 81 and maybe slower to heal than previously.We will return to the U.K. at the end of the year after 20 years in Portugal and an expat life since 1966.
Do you consider trying tociclizumab/Actemra treatment, if available here, may help, even though it may be a problem to continue when back in the U.K.?
Our GP has closely monitored inflammation blood markers (CRP, etc) and explained the difficulty in making a definitive PMR diagnosis even following a process of elimination in trying to dismiss other disorders.
Earlier this year we celebrated our Diamond Anniversary and had to cancel our family “Knees- up” because of a severe flare. However our cake is still awaiting our return and we intend to have a proper celebration with our family,
After two weeks of 12.5mg opiate patches my wife has today stopped applying them because of negative reaction (constant increased level of fatigue, dizziness, lethargy and pain).
Mmmm - not sure about Portugal and Actemra - Spain uses Actemra I know. And the UK may well prove a problem. But I imagine it will pose a problem anyway to get timely rheumatology care when you return to the UK.
Sorry to hear about your wife’s suffering. That wound needs a non-adherent dressing like a silicon gauze eg. Mepitel that doesn’t stick at all under a dressing with a gentle adhesive eg.Allevyn Adhesive. Some dressings come with the silicone bit already there. It is best to get a professional to look at it and advise so you can get on with it yourself. The skin flap looks no longer viable but can be if they are pushed back as soon as the wound occurs, it’s worth a try if the sound is clean. The skin needs a thick moisturiser applied at least twice a day; that skin looks quite dry still. If it is well moisturised it’ll be more elastic and resilient. Keeping the foot up (unless there’s arterial problems in the lower leg) helps the blood flow back and reduces swelling and leakage.
my husband had open scar from infected surgery like that and while it was open he had to put vaseline on it and then dress it with a bandage. It sounds odd but the doctor said they have found that the vaseline lets it heal faster from the inside out. Check with your doc. I am so sorry for all your wife is going through. You sound like a good guy !
My legs look the same as the one in your photo. I have spent the last six months visiting the surgery for dressings twice a week. In the end I was given a supply of Mepital and Allevyn to use at home, sometimes difficult if the skin flap needs to be pulled down. I am extremely careful now but still even a fold in the bed sheet can split the skin. Must say that at 9.5mg the bruises are getting lighter in colour.
Oh that is such a familiar sight, I know only too well the frustration and dismay those discolourations cause.. I only have to brush against a rose bush to spring a thousand leaks. As Snazzy says, ease the little skin flaps back into place straight away, it does hasten healing. I've also found large waterproof dressings with antibacterial Silver help but I should go to your surgery for the initial assessment and they'll advise you. I have extremely dry skin and use Doublebase cream, it can be prescribed, and apply frequently. Arnica cream works on the bruises to fade them.
It's extremely depressing to have to cover your legs (and arms, in my case) because of these scars. I love swimming in the sea and river but have to get up very early before other people are around to save myself embarrassment. Otherwise I wear long skirts or light cotton trousers in the summer (envying those skipping about in next to nothing!) It's a real blow to one's confidence and can be very isolating, but maybe a couple of new specifically 'cover-up' light things can give her a boost. As for medical advice, PMRpro and SnazzyD have some good thoughts.
You're obviously a very loving husband which is worth more to her than anything. Good on you for posting, hugs to you both.
I was getting moisturiser on prescription until two months ago, when I was told on collecting my repeat prescription that it can no longer be prescribed . Since then I've been using Sanex Atopicare which I find just as effective.
That's the second reply I've forgotten to hit the button so it disappeared.. thanks for the info on Sanex, very useful to have a back-up plan.
Dear Mr Yorkie2
Your poor, poor lovely wife, your heart must be broken.
SnazzyD has made a good recommendation for dressings, anything that has the covering to help prevent the dressing sticking to her leg.
I think it needs expert care from the Medical Care Team at the Surgery & Dressing daily or at least every other day. The main objective is that it doesn’t become ulcerated as that is so difficult to heal particularly as she’s still on steroids.
Have you seen a Rheumatologist regarding adding in a steroid sparer to try & help reduce the dose? But it can’t be done overnight as there are risks attached to that too.
You said she’s had many falls, has this been investigated? I’m sure you just want to wrap her up in cotton wool until she gets better. 💐
Please give your lovely wife my regards & best wishes l know they can’t really help but it’s nice to have support 🤗
Hi, Like so many others the picture is similar to my hands.
With regard to Actemra I believe your wife would have finished the dosage by the end of the year. I was on the injections but my body did not like them. The time I was on them thought the gca and pmr were well controlled.
If given the opportunity Actemra would be good to trial.
So sorry to hear about the suffering your wife is going through. Please let her know that we are all thinking of her. Her leg wound looks like it requires professional assessment and treatment. I agree that it may turn into an ulcer and become more difficult to treat so urgent care is required.
Is she doing a grain free and low carb and no sugar diet? Diet is imperative. I’m also on Forteo for my bones. That’s a daily shot. Also important to eat a non GMO and organic diet. Meats should be grass fed because those are omega 3 as opposed to the factory fed which are omega 6. We need the omega 3 for pain relief. Those sores look terrible and I hope she is getting help with them.
Before my PMR was confirmed I had been treated with opiate patches for pain and I am still using them. I didn't get on with Butrans at all but Fentanyl at 12.5 mg have definitely controlled the pain and allowed me to taper to 8.5mg after 16 months. If I forget to change the patch after three days I certainly feel the difference.
My doctor has allowed me to stick at 8.5mg for some time now while I am going through a very difficult stressful period. I don't honestly know whether he lets me stick with the patches to avoid a painful and difficult withdrawal, bearing in mind that pain relief is not supposed to help with PMR. But I am moving to a completely different part of the country soon so maybe a new doctor will think differently.
I have blemishes and thin skin on my hands which look a bit like your wife's poor legs. I hope she finds relief soon.
Dear Yorkie2’s Other Half, First of all, may I say "You are a star!!!" You win "Best Partner of the Week Award!"
Secondly, thank you for reminding me that my woes are NOTHING in comparison to some people's! I will think twice the next time I start to complain about my bruises and tiny gashes.... as they are almost invisible compared to Yorkie2's! I am so sorry she has to deal with this....
I will keep both of you in my thoughts and prayers and hope that her skin "toughen's " up soon!
Ooh, I so feel that leg pain. I have had 5 leg ulcers. Started with the Dermatology Dept, then to a nurse at our surgery, who , after trying numerous methods, hit on VISCOPASTE. The improvement was both visible and dramatic. I was able to do dressings at home, with the nurse checking it weekly. I wish you both the very best, and a good recovery for that leg.
I had a wound identical to this after knocking it on a car door. After three weeks of it not healing I went to my GP where the nurse practioner prescribed dressings that contained iodine. They were called INADINE. These started the healing process quickly and I don't think it would have healed without them. You should certainly seek medical help.
Wow! Yorkie2's other half how lovely you are, not only in actually understanding and empathising with all that your wife is going through, but also actively seeking help!
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