Does anyone have any experience of Platelet Replacement Therapy? I have had chronic tendinopathy since Dec 18. I have had acupuncture, ultrasound and done some physio. I have 6 cm thickening, vasculitis and bursitis. On a scale of 1 to 10 (1 not better, 10 better) I have plateaued at about 7 for over six months. At the start I was crawling on hands and knees. I still go down stairs very strangely and cant walk flat footed. The wonderful physio suggested I had PRT and saw the doc yesterday and he gave me yet another shoe rise to use.... i am a theartre director and choreographer and desperate to work properly. It is so stiff and painful and some days (when i am not working) I think it will get better - on days like today I cant stand and would abandon the risks and go for it.
Risk of infection when on Pred is higher and rupturing the achilles tendon???
At least the doc yesterday acknowledge that there maybe a link between steroids and tendon issues...
Desperate to feel like myself again!
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Not so far, a friend with plantar fasciitis said the same thing. I was told by the doctor it was 80% effective. I must be in the 20%! The only effect was a depleted bank account. It is not cheap.
Gosh, i thought it would work slightly quicker than that, but then if it is chronic it will be slowly slowly i suppose. Was it on one achilles or both? i hope it does start to show improvement soon for you.
When I exhausted all other avenues therapy wise with years of tennis elbow I sought advice of Sports Physician who carried out 2 autologous blood injections eventually proving enormously beneficial.
As you will probably know they withdraw your blood, spin in centrifuge to obtain platelets which are said to be rich in growth factors to promote healing.
I still need to brace this elbow when canoeing or gardening plus stretch exercises prior to these activities - good luck ~
Thank you so much Megams. Have to wait another 6 weeks now for next apt. Saw them yesterday and the doc just gave me another heel raise! Going around in circles. I had a full day yesterday then agony all night not being able to sleep - if I could have I would have injected myself! lol. Onwards and upwards. Its so good to know you had a positive response.
Hi SnazzyD, yes, achilles tendinopathy. What is your journey with it? Can we compare notes?
Had it since Dec 2018 and only diagnosed May 19 when walking with a stick and both achilles taped up. Had accupunture which helped the pain but not mobility then 8 sessions of ultra sound. Good physio and able to do some moves now and mostly walking without a stick. When I work, by 3 pm I am in agony and cant even put my heels on the bed. I have 2 soft boots that I wear at night to keep my ankle and foot in a particular position and that helps but in the morning both achilles are sore and stiff, so stairs are awkward. Another 6 wks and I hope to get the PRT, if not on NHS then I would consider going private. I have to get better than this. I have lost work, social life and still juggling GCA... lol. The spring cant come soon enough; a change in the weather will be lovely. x
Um, journey seems too grandiose a term to describe my 10 yards in a wheelbarrow. Started to stiffen up last Feb when I was in low single figures of Pred. Started with my walking boots irritating the Achilles area so I bought walking shoes. Found myself having to shuffle to loo in the morning they were so stiff. I also have a bunion due to my inherited gait. I also suffered damage due to repeated Quinolone antibiotics when on chemo in 2004 that appeared to resolve after 18 months. I tried self help through 2019 and went to GP in Sept. I had an ultrasound that said there was thickening and inflammation but no holes or tears. Since then I’ve been seen an orthotics person in Nov who said I should have been sent to an orthopaedic for assessment because of the steroids. I waited until Feb only to find out I was being sent to a musculoskeletal assessment physio which is this Weds. I have been ok until I weight bear on slightly uneven ground, then it’s murder, but different each day. In and around the house it is ok. Recently I get pain at night but in the mornings I feel less stiff. I don’t wear lifts because it upsets my bunions. I can’t exercise properly and I can’t walk in walking boots which is so upsetting. The best things have been a thin carbon fibre insole to help my gait that I got on a cruise ship (!) and using hot foot soaks in my vibrating foot spa. I was a present that spent its life in a cupboard for years and has now got its chance to shine.
You have been through the mill and its seems like when this problem presents itself we get sent hither and thither. Mine is different every day too. I too have a lovely collection of shoe orthotics..., lifts, and inserts from musculoskeletal. In Jan I was sent to the fracture clinic when physio said ethically they could no longer treat me as it was still too painful - 6 cms of thickening, and vasculitis. For 9 months I felt like it was going to tear with the slightest turn now it feels like a matted bit of carpet instead of a tendon... if I was a horse i would have been put down.
I too am tapering down and in single figures - down to 8 mg from 60mg. Every time I reduce it seems to be more painful.
It is hard to know if yours is more painful because it is vasculitis driven and less Pred means less control. Or, whether the Pred is merely no longer masking the damage. Mine improved with reduction but is now impacting on my feet and it is starting to feel chronic. I still walk the dogs daily in the fields but I have no idea if I’m preserving function or increasing micro wear and tear. Like you I’m beginning to panic that I’m on a slippery slope to avoidable permanent disability.
I'm having problems with the achilles tendon that was a problem 6 years ago with methyl pred and a quinolone combined - rest improves it briefly but I walked into the village and back yesterday and it is protesting again. I asked the GP who is rehab trained so I thought she might be some use - and she told me to speak to my rheumy!! I have an appointment on April 1st - maybe! The lockdown may mean perceived non-urgent appts may be put off, though mine is to get the results of the PET-CT scan too.
thanks PMRPro. Be intetesting to know what your Rheumy says. Mine said there was no proven link between tendinopathy and pred (I was on methyl too for a short time) but the fracture clinic doctor said some research shows that there is... I do hope you can get your 1st April apt and shed some light on it, also your PET-CT scan. Healing thoughts.l
Plenty of evidence that methyl pred is associated with it on its own - and in combo with a quinolone ... I did a LOT of reading on the topic at the time!! And the tendency for it to happen is not restricted to the period you are taking one or other - it can persist.
thank you SnazzyD. At least we know we are not alone in our pain . I just hope that keeping going on it is not causing permanent damage. As an X dancer I am used to injury but this is not the same at all. healing thoughts to you.
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New diagnose ?
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