It has been awhile again as I have felt reluctant to come to terms with the now clear FACT that my PMR/GCA have never really disappeared after 7 years. I am still on my lowest dose of 8.5mg of Pred which I have been unable to reduce any further - especially in the last few months with all the usual aches and pains in shoulders and hips etc. and quite bad fatigue which I had in the earliest stages of this 'fun' disease. I have over the years had better and worse periods but lately it has been just like the more miserable old times.
In the last month I have also had the pleasure of discovering that a small dark spot on the outer edge of my foot - which I have had for ages - and thought only a harmless wee mole - as it was dismissed as not significant by many medical eyes over the years - is actually a melanoma. Yes according to histology malignant and an invasive type. So it was promptly removed by an excellent local doctor who is part of a reputed skin clinic. He was concerned the moment he saw it and a week or two later sent it to pathology. The result confirmed his suspicions much to my surprise. He then referred me to a plastic surgeon who was to do a wider excision - which is standard even though this melanoma was only small (Stage 1) . The surgeon didn't think I needed any lymph nodes checked - thank goodness but suggested having the wider excision which would also require a skin graft from my instep and at least 2 weeks with my foot elevated. Obviously seemed a small price to pay for more certainty it would be permanently removed and pose no future threat BUT BUT BUT
He also then told me I would need to reduce my Pred to 5mg to even have this done !! Given it has been almost impossible for me to reduce at all lately (or 'ever') and the few times I have accidentally missed or a dose or tried reductions I have been almost non functional. So I explained to him I couldn't currently do this - especially in a short time frame.
He didn't know anything much about PMR/GCA at all but mentioned LVA and a bloke who managed to do this for another operation. He clearly didn't like the fact Pred could delay wound healing and said he wouldn't do the op without me reducing to the 5mg. So quandary .....
The last time - a while since I even saw my Rheumy - she just threw up her arms and told me I would likely have to take Pred 'forever' - but prescribed 10mg of Methotrexate to try to help - which it appears not to have at least in any major way. I was not eligible then for Actemra either.
So what to do !? The surgeon wasn't helpful at all really saying I could just wait the three months before a return (for 1st of 3mthly checks from now on) to my referring skin doc and see if there was any sign of a recurrence - but this seems a little risky in some ways even if it is a low risk given the size of the Melanoma.
I never anticipated any pressure to reduce Pred especially at speed - and from what I have read there are varying view on this and many surgical procedures - recommend taking EXTRA for many ops. I realise wound healing may not be great but I heal fairly well with many small injuries I get as a gardener and the original excision healed up quicky even with a few stitches and is almost invisible after a few weeks.
So any opinions ideas or observations would be appreciated. I also cannot help think we 'palefaces' who are more prone to PMR/GCA are the same 'types' susceptible to sun related skin stuff like Melanoma ...
Best wishes to you all
Rimmy
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Rimmy
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Wow! Sorry that you have had to go through this Rimmy. The treatment seems the best you can hope for. Hats off to you for no fuss bravery. I keep well out of the sun it’s as if my body knows. I am sure you will make sensible decisions. Good luck with this. We are finally going to join you in Australia. Daughter’s husband removes & checks moles every day in his skin clinic. I am covered in moles! 😕
Thanks SJ - yes I also have many moles - mainly on my back - remember the backless swimsuits of bygone days? But I didn't roast myself like many did in the 60s and 70s with coconut oil to turn my milky white skin into a nut brown - and I have worn sunscreen ever since it was recommended in health promotions with for example in OZ 'slip, slop, slap' ads - but of course bits still get missed. Must have worn open shoes enough at some point as I have virtually no other freckles or spots anywhere below my knees - but there it was on my foot. Not sure I am actually 'brave' in the end everyone has something challenging if they live long enough and so far not thinking this will be the thing to 'get' me as found at an early stage - but who knows ! Great you coming to OZ !!
So sorry to hear of your latest health challenges. 7 years is a long time to be dealing with PMR/GCA….I know how you feel as it been 6+ years for me (PMR only). I’ve also been stuck at 9mg pred for 2 years and during that time happened to get a consultation with 3 different orthopaedic surgeons for a total knee replacement.
One surgeon was ok performing the procedure for any patient on 10mg pred or less. Another surgeon urged me to try and get down to 5mg. And the third surgeon preferred I be off pred altogether. Each cited a concern for wound healing.
All this to say that getting a second opinion from a different surgeon may provide another option moving forward. Knowing that such a fast pred reduction is unattainable, hopefully they can work with you at this dose. Any chance you qualify for a medication called Kevzara? It is approved in the US for PMR.
If MTX was not of any help I would think you would be offered Actemra. I believe in some cases/places you have to try a steroid sparer such as MTX and have it be deemed ineffective or produce significant side effects and end the medication before qualifying for a biologic like Actemra. Perhaps your healthcare system in Australia works differently.
Just throwing out some ideas and support during this quandary and your ongoing symptoms. I think it’s positive that you have a history of healing well. We are here for you as well as you grapple with your health challenges.
Hello PMRCanada Great to hear from you although sorry you've also had such a long term 'struggle'. Thanks for the info - interesting how 3 different surgeons had such varying responses - I was suspecting that there would be a similar range here. Problem I have is that living in a small regional city in OZ there are not many specialists - and they are often heavily booked so hard to shop around. I can go to the nearest large city of Perth but try to avoid that if possible as a day's drive usually means staying there and not idea after an op. Kevzara I had heard of but not available in Australia for PMR I believe - altho I now see some international suppliers offer to supply it - and I would have to research that as well. I will check this out with my rheumy who I may get to speak to via tele health as she is super busy and I haven't seen her for quite a while - I'll see what she says about this and Actemra which I wasn't eligible for here last I asked her anyway. Thanks again also for your very kind wishes !
Maybe raise the subject of Actemra again when you speak to Rheumy. Now you have tried MTX and it hasn’t helped there may be more chance, hopefully LemonZest11 will be along and advise of her experiences with it.
Also as suggested, it might be worth getting a second opinion from another surgeon who may be willing to carry out procedure on a slightly higher dose of steroids.
Thanks DL ( as I used to say to you - you have the same initials as my first two real names so you always feel 'familiar' ! in fact I was nicknamed 'DL' as a toddler) Yes I will certainly raise Actemra again with the rheumy as even apart from the melanoma issue I am a bit 'bored' to say the least with Pred after all this time especially when I still don't feel well even with it a lot of the time - although I obviously appreciate I would have been MUCH worse without it and I am always grateful I have my eyesight when my Mum lost hers with undiagnosed PMR/GCA a generation earlier. I now have an appointment with the skin doc who diagnosed the melanoma and did the original removal - hopefully he can refer me to another surgeon with a more flexible pov ! Hope you are doing well yourself - all the best
A melanoma - even in stage 1, I understand your concern.
I can only relate from my own experiences with skin cancer - agreviated according to my dermatologist, by prednisone use.
He removed a quite extensiv spot, wile I was on 17,5 mg p. And on top of my head (I have very disappointing hair 😉) which is a difficult spot for healing. And he had to make a deep incision because, frankly, with PMR and LVV vasculitis, I could not face an earlier consultation on yet another disease. Not he smartest idea, I know. Took 5 months to heal.
Since then I am have had two more spots removed, all while taking over 10 mg of prednison all on top of my head, so promoted to a plastic surgeon because such a tricky spot. And yes , less prednisone means quicker healing, but as your experience already made clear, it should not warrant a veto.
It seams it leaves you with a difficult choice: battle it out with your current surgeon or find a less risk averse surgeon. Perhaps your rheumy can put in a good word?
Feeling fatigued is the pits, and makes me at least depressed and unable to take on the challenges our lives and bodies put before us. But I treat it also as a symptom, so a quick reduction when you are already experiencing a come back of PMR, seems to me not a good idea.
Wishing all the best, it ìs hard, whatever other people may think.
Thankyou Oma - that sounds a bit tough on your poor head - I really appreciate you sharing your experience with me and agree a 'veto' isn't quite right in such a situation . Take care of yourself
I’m glad to hear that you might be able to use a different surgeon. I was turned down for joint replacement surgeries many times before I found a surgeon who was not afraid of the pred not of my weight!
I have had 4 joint replacements with that surgeon whilst on 11mgs pred throughout. My healing was absolutely normal. The dressings were removed after 2 weeks on all 4 and looked absolutely fine. I suspect it is lack of experience of working on people who are on pred that scares some surgeons . Because my surgeon had a lot of experience working with both fat people and people on pred, that he knew what to do and also had an anaesthetist who was comfortable with the situation.
My advices keep looking until you find the right surgeon!
The 'right' surgeon is clearly the key - and it seems with some degree of pragmatism when I actually need to get this done relatively soon as I don't have any other choices than to still be on a similar dose or Pred. Encouraging to hear you healed so well and with much more intervention than I actually need to have !!
Hard luck! Coincidentally I was watching a medical programme last night where one of the main foci was melanoma - a female surgeon at the RPA hospital in Sydney who was extolling the advances in management in the least few years. And the case she was showing DEFINITELY had little to do with sun exposure given where it was!
I doubt a biologic will help in the short term - you would have to stop them a month before elective surgery as well and not be able to restart until the wound was healed. The increase in pred for surgery is to deal with the inevitable adrenal insufficiency after so long on pred and would be administered in the form of a hydrocortisone infusion during the operation.
I think you may have to bite the bullet and venture to Perth where there must be a really active dermy research group - and someone like last night's surgeon, it may have been Gloria Fong, she was of Chinese ethnicity, but I can't remember. Or you reduce rapidly to 5mg and accept the return of PMR pain and disability in the short term to get the surgery.
I had to go to my GP with something on my face, it has been there a few weeks sometimes almost going away, then seeming bigger. She had a close look with an instrument and said she thinks it’s an Actinic Keratoses, she prescribed cream which took over two weeks to arrive! Instructions says it an anti cancer cream!…..Have put tiny dab on every day for last 3 weeks, now bigger with a crusty head! Going back to have it checked in a week or so. Was that mentioned in your programme?
No, that is very early stage stuff, to remove what are called pre-cancerous cells. And yes, does make things worse before it is better. I have a couple - the dermy didn't suggest anything other than using suncream more!
Thank you...... will have to get more s uncream...... when well enough to go out!.... So weak/dizzy nd fatigued.......thinking of going private for more tests....but where?? birthday next week, will have to take extra pred to go out for meal with family with them. Have you managed to get lower?
7mg plus Actemra is where I'm sticking. At 6mg the bicep tendinitis is to uncomfortable and disabling, at 5mg the adrenal lack is too apparent. My rheumy is happy I'm totally stable at 7mg and 2 weekly Actemra. I'm working on the Actemra, to see if I can stretch that out. Every 2 weeks is fine, not sure whether I can feel it at 2 weeks and 3 days!
Wish I could take a DAMARD.....but of course I have "fibromyalgia!" ..../with my legs nearly collapsing under me and with tremors....sick of the shaking....think I will get back to Neurology......will pay if I have to.....
I went to my doc and was told mine was AK like you. I was prescribed Solaraze which is Diclofenac 3% gel and the mark has almost gone after applying twice a day for 7 weeks.
Good that it has nearly gone. Mine has a dark crusty head....my sister now remarked how big it was! My cream is EFUDIX....5%....other name for it.....Fluorouracil......it says keep away from naked flames!
Hi PMRpro - I am hoping I can get someone down here in the south west of WA but will travel if I really must of course. I agree going down the Actemra or biological path is likely not going to resolve this problem fast enough and maybe not at all but just thinking of every possibility - maybe an increase in Methotrexate might help I have only been on 10mg a week. I have never thought it did much good but when I stopped it for a week while I was slightly more unwell I thought it may have had more impact than I originally considered - not sure. And if I do a really rapid Pred reduction however I fear I wont even be functional - pain is one thing but feeling faint, dizzy and totally weak and disoriented another - so I will still try to avoid that if I can. I will ask my original referring doctor for his best advice - and thankfully he is a very nice approachable chappie. Hope you are doing well PMRpro - are you still considering moving back to the UK - or maybe you have already ?
At what stage do the adrenal insufficiency symptoms set in? Down to 5mg shouldn't put you at risk there but you might feel rubbish while trying to function normally. They do have to operate on patients on pred for Addisons disease - how does he deal with that? It does sound as if he is actually factoring in the adrenal insufficiency aspect.
I have never reached a collapse kinda stage since first on Pred but just missing a dose once or twice during the last 7 years indicated how bad I could feel without it - mind you that was only very temporary and just highlighted to me how much the Pred was doing. Given that 7.5mg is a physiological 'dose' I am not taking much more than that anyway. I don't think this particular surgeon has really had many people with issues relating to Pred - many of his clients see him for facelifts etc - he is quite a well-known plastic surgeon for such things. I think he realises I can't do without any Pred but totally underestimates how bad it could be if I had to taper fast.
Hmm - have to say, I'd like to be under the care of a melanoma specialist who is totally uptodate on the options - which are far better than even 5 years ago,
Thanks PMRpro - the plastic surgeon who refused to do the excision is actually just a visiting specialist from Perth and is a reputed for his work with Melanomas in WA. BUT fortunately my diagnosing GP - from the local skin clinic here has now offered to do the wider excision without me having to reduce my Pred and without having to do a skin graft from the sole of my foot as well !! His first excision was very neat and healed quickly and well and although this will be a bit bigger I have confidence in him - he is thoughtful and intelligent. So some relief and as this is on the cusp of a Stage1A/B I feel OK with that.
Hi Rimmy, coming to this late, I've only just seen it. I swear by Actemra, but I know it's not successful for everyone. My Rheumatologist is doing a trial on rapid pred reduction using Actemra. I'm not sure how rapidly the pred is reduced but I think it might be 1mg per week, if that's any help to you. I managed to get off pred altogether using Actemra fortnightly and then three weekly. I didn't use the rapid method, but if you are interested, tell your Rheumatologist about Dr Julia Murdoch's trial at Royal Perth. She has a clinic there on Thursdays. I know you need to act hastily so it's worth a shot. I'm in Perth, are you far away?
I think once the Actemra has started working then you can reduce very fast - but it doesn't always work as quickly as some think. It has to fill all the receptors first for best effect.
But the major problem for Rimmy will be that the Actemra also has to be stopped before elective surgery - preferably at least 2 weeks before.
It has an amazing hospital - and lots of melanoma so Aus as a whole is well up in the field. But doctors in private offices/small local hospitals, not so much.
Thanks Lemon Zest - luckily as you may see in my reply above to PMR pro my skin clinic GP here in Albany has offered to do the wider excision himself without me having to reduce my Pred. He was very helpful when he saw the plastic surgeon wanted a quick reduction which I couldn't have done. Who is your rheumatologist ? I am In Albany where we only have visiting specialists in some fields and mine isn't available for months although we can go to Perth for urgent situations. I will also look at Julia Murdoch's work as it has been some time since I've considered other avenues. Best wishes Rimmy
I wonder if you could get a second opinion for the wider incision? Another surgeon may not be so cautious. There have been many stories on here about quite major operations with Pred still being taken.
I have also been on Pred for a long time - 5 mgs now and 8 years total, if I try to reduce by half a mg. I am in agony. I don’t envy your quandary. I am glad it was caught and I hope you are fine whatever you do. I seem to heal quite normally too.
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