Further to my messages re. shoulder problems, I had appt with specialist today. After consultation & more xrays he has suggested a steroid

[optimist-ok]

injection with more physiotherapy, but ruled out an operation at this stage. Has anyone had a steroid injection whilst already on steroids? I am grateful for any information on this.

[EOLHPC]

This year i've had 2 steroid injections while on low dose prednisolone tapers

I'm in the wait n see stage of vasculitis diagnosis, but I'm diagnosed with SLE and a bunch of associated conditions inc hypermobility. I'm 60, had SLE all my life, but didn't know SLE had been diagnosed in my infancy & youth. Doctors only realised & began treatment 2 1/2 yrs ago.

My feet have been a lifelong prob, responding ok to conscientious conservative management. Now, for sle + simultaneous raynauds & erythromellgia, + general progressive symptoms etc, I'm on daily hydroxychloroquine + Amitriptyline + 3 x 10 mg 4 week oral prednisolone tapers, and have had the steroid injections I mentioned in my right forefoot for mortons neuroma & bursitis. My rheumy now wants me to add mycophenolate to my daily meds regime

my rheumy & pain consultant said I could have up to 3 steroid injections per year alongside the pred tapers. I have responded well to injections in march & June which overlapped with 2 pred tapers, but the positive injection effects only lasted say 1 month each time.

before trying a 3rd injection, my pain consultant has referred me to an ortho surgeon expert in feet (apparently a true wizard - I've seen others who definitely were not wizards) because he is concerned that the tissue bleeds i've had for years (mainly in my toes & fingers) seem to be increasing in frequency especially when I drop dosage low during these pred tapers.

Hope this is some help

[optimist-ok in reply to EOLHPC]

Many thanks Barnclown.

Good to hear that others are having steroid injections, but wonder if its worth it as results are short lived.

[PMRpro]

I have polymyalgia rheumatica and am on steroids permanently, currently 6mg/day but last year I had severe trochanteric bursitis on both sides despite being on 15mg/day at the time (that's the bursa in the hip joint and down the outside of my thigh). I had steroid injections into the bursae, one pair in July and another in late September. The pain improved almost immediately after the first to a bearable level and then cleared completely after the second. I have been pain-free in that respect for over a year now and am able to walk up to 5 miles - instead of a couple of hundred yards using crutches!

If there is local inflammation an injection directly to the site will deal with it far better and with an overall lower dose of steroid than trying to control it with systemic pred (taking pills). Some doctors say the local injections don't raise the pred level in the bloodstream - it does to some extent but it depends on the blood supply where the inflammation is. That also accounts for why oral pred won't help a local problem - tendons don't have much of a blood supply to transport the pred to the area where the inflammation is.

But Barnclown's doc is right to look for a mechanical cause - I have also had a lot of work done on back muscles (lower back problems can contribute to thigh pain) and that has also helped prevent trouble. The injections were done before the back work though and achieved a lot - there is no problem with having injections and oral pred.

[EOLHPC in reply to PMRpro]

Hi PMRpro: i wonder if you have experience of an associated subject...I'll touch on the subject here first in case anyone else is interested....and because one of the background is in my reply above

My pain consultant referred me to this prof ortho surgèon because he works with him on CPRS (complex regional pain syndrome) cases, which he considers I am (CRPSII). I am seeking this opinion privately because the NHS ortho surgeon whose MRI diagnosed mortons neuromas with associated bursitis in both feet said that i should go away and avoid weight bearing because my immune condition prohibited surgical treatment. (the mortons neuroma/bursitis symptoms have been debilitating since 2008). So, i turned to my pain consultant who has successfully treated my spine condition Over the past 15 years, and who was the first to suspect I had a systemic autoimmune condition.

Turns out, my NHS rheumatology dept also has an expert on CRPS...at my recent clinic appt the registrar said that their expert could take over my treatment, and would be very interested in this prof ortho surgeon's opinion. my feeling is that surgery actually is inappropriate, but that in today's NHS this sort of circuitous route to treatment is sometimes inevitable

I have researched CPRS a bit, and understand that erythromelalgia (EM) is thought to be a similar disorder and also thought to be an autoimmune response disease that can be caused by injury, non injury, and can progress from the injured location throughout the entire body. I seldom find either CRPS or EM discussed in the HU forums I visit (lupus uk, vasculitis uk, raynauds & scleroderma, sjogrens, endometriosis). So, I go into this now in case your experiences, or those of others, have touched on any of this.

My appt with the prof ortho surgeon is next week

Apologies if I should've started a new ? Or sent a private message instead of going into all this here...I will do either of those next if would be more appropriate

[PMRpro in reply to EOLHPC]

I'll need to do a load more reading on CPRS but I think it is interesting that in the early stages of the PMR I developed foot pain - especially after sitting for any length of time I was not only stiff but my feet felt as if I was standing on a mixture of broken glass and sharp pebbles. Others with PMR have also mentioned something similar. I also was very sensitive to firm touch on my shins and ankle area and on my biceps - the biceps effect is often mentioned in association with PMR, the patient feels the contact for far longer than you would expect after pressure on the muscle. Is this a similar effect I wonder?

The back problem I have fits the criteria for myofascial pain syndrome and I have discussed it at length with a research orthopod who has identified foci with high concentrations of cytokines (the substances that it is believed give rise to the inflammation in PMR) at quite specific points in the lower back, shoulder area and along the spine. They give rise to referred pain - which can be into the thighs and fits along with my pain points. It is easy to confuse it with fibromyalgia but there aren't as many pain foci. Unlike fibro, they can be "erased" by quite specific manual techniques - I had a limited amount of that from a physio here which started the recovery process but then I'd run out of allocated sessions. The pain specialist also used manual mobilisation as well as "needling" and cortisone injections - and it has worked wonders.

The entire pain spectrum has now resolved, some faster than others but I now feel I'm back to the early stages of the PMR but better - if you see what I mean. I think - together with the pain specialist - that the various things are related/run in parallel - if only more docs would consider that as a possibility. In the UK the only option I found was in alternative medicine - but it was similar to what is used here.

Interesting - will get on with the reading!

[optimist-ok in reply to PMRpro]

Is 'needling' acupuncture?

[PMRpro in reply to optimist-ok]

No, nothing to do with acupuncture. You should find more info if you google it - here it is called "quaddling". It involves multiple tiny injections under the skin/into the surface of the muscle group affected, sometimes using cortisone, sometimes using sterile saline and in some cases they do use a "dry" technique I believe. It does hurt at the time - it burns more than hurts (if that makes sense) but as soon as they've finished the pain is gone. It isn't unusual to hear squeals even outside! But it works so i never mind the pain - nor do loads of others who return for more!

[optimist-ok in reply to PMRpro]

Many thanks, I hadn't heard of that procedure.

[PMRpro in reply to optimist-ok]

Not surprising - I know there are clinics that offer it in the USA but in Europe it seems to be used in the Germanic health systems where quite a few unusual older therapies are still used.

[optimist-ok in reply to PMRpro]

Another therapy was mentioned to me at the weekend, my daughter saw this in a health mag! Its CranialSacral therapy - not sure if that would be any use for GCA, though, as it involves head treatment as far as I know; may help PMR?

[PMRpro in reply to optimist-ok]

Hmmm - I wouldn't like to comment, except to say google it and read Wiki's article on it. The paragraph about the American Cancer Society's thoughts expresses my opinion of it quite adequately.

The injections I had are mainstream medicine here and Bowen therapy (which I have also found helpful) is also sometimes used by physiotherapists. CST - not so much!

I have a basic rule of thumb: any therapy which uses psuedo-scientific jargon and claims to heal everything is quite likely to be what it sounds like - too good to be true. Especially when it is not cheap.

[optimist-ok in reply to PMRpro]

Thank you PMR pro, that's an informative reply & quite encouraging result wise.

[optimist-ok in reply to PMRpro]

Thank you for the useful & encouraging info - I think I've put my 1st reply below the wrong query!

[tracynoe]

I take prednislone and MMF daily for vasculitis and connective tissue disease and I have had ultrasound guided steroid injections into both hips because of chronic calcific trochanteric bursitis unfortunately for me they did not work they actually made it worse and I have now been told that they can now only offer me pain killers. I decided to try acupuncture which I had with great success when I had a torn rotator cuff in my right shoulder. The acupuncture has not yet had any affect on my hips but according to my acupuncturist this is because I have had steroid injections into them and that it can be up to 18 months before the residue left by the injection clears and allows the therapy to work. She has researched it and found that there are some acupuncturists that will not treat any areas until 18 months after. I still have acupuncture as it has helped my bad knee it now no longer throbs and swells it helps with my back and the awful shin pain I get. In future I personally would think twice before having any more steroid injections.

This is a personal view and not suited to everyone but thought you had to hear both sides.

[optimist-ok in reply to tracynoe]

Many thanks for your reply. It does seem to be a very personal decision based on where the problem lies.

[PMRpro]

I think the biggest difference here seems to be my steroid jabs were deliberately NOT into the joint but into a more general area - my GP did the second lot, she used to work in rehab which is basically rheumatology and she emphasised that difference. I had also had a steroid jab years ago for a knee problem and it was good - I wonder if different people react differently?

Have you considered Bowen technique? I found it very helpful and it is non-invasive and very gentle though can leave you feeling quite exhausted if much needs sorting out. A good practitioner will tell you that if it is going to help you will feel a difference after up to 3 sessions - if there is no difference it probably won't help. It has been shown to be particularly useful in cases of frozen shoulder - and my Bowen people in the northeast said they'd had good experiences with bursitis.

[optimist-ok in reply to PMRpro]

Again many thanks - there seems to be a variety of possible helplines. I will investigate the Bowen technique.