RA + PMR + Hortons

[PMRHortons]

Does anyone know how common it is to have all 3 conditions, I am waiting for a PET scan but given every joint in my body except my feet is giving me pain at a level 8 or higher first thing in the morning I think it a certainty I have hit the Jackpot and have all 3. While waiting for PET scan I’m taking anti-inflammatoires and high strength pain killers. I can’t imagine there’s any thing else that can be done until diagnosis but someone might have tried something that works. My partner is a believes in alternative medicine I’m not sure myself. Standing under a hot shower works wonders but can’t do that until 3rd July.

[Hidden]

Hi, I have been on this forum for around 3 or 4 years and haven't seen that combi but I don't read every message! Had to look up Hortons so obviously no experience. I presume you have tried RA forum too? Usually if people have had such a complex set of DX it should be in the related posts below but I can't see any. Sorry I couldn't help. Hope you feel better soon. 🌻

[PMRHortons in reply to Hidden]

Thank you

[SheffieldJane]

Surely if you have Hortons/ GCA it is imperative that you are put on high dose Prednisalone immediately as a matter of medical emergency (60 mgs) at least? It is far less harmful than the danger to your vision caused by delay. It will spoil the scan but that is not the priority here. Please seek urgent medical advice!

[PMRHortons in reply to SheffieldJane]

Thank you I’m keeping a close watch for symptoms of GCA IF I have any I will be going straight for 60 mgs pred

[PMRpro Ambassador]

They aren't really 3 different conditions. Horton's, these days more correctly known as giant cell arteritis, and PMR are a combo that often goes hand in hand, with PMR then forming a symptom of the GCA. They are both forms of vasculitis with the same underlying autoimmune cause.

However, who is it that suspects GCA and why? A PET might be appropriate for someone with just PMR symptoms but I didn't think it can show much in cranial GCA since the brain produces so much emission signal that details are lost. For anyone who may have GCA where the suspicion is high should be put onto high dose steroids immediately to reduce the risk of permanent visual loss which is a very real danger with untreated GCA. Neither anti-inflammatories nor other pain killers will achieve anything with PMR or GCA - pred is the mainstay there and in the case of GCA the only certain management approach to reduce the inflammation although there may be other approaches once that is achieved.

RA leads to joint damage - and it can present very similarly to PMR at first - GCA has a high risk of sight loss. Nothing would persuade me to abandon mainstream medicine for either. That isn't to say that complementary approaches may not be very useful in dealing with the side effects of treatments and general well being.

Why can't you stand under a warm shower before July 3rd?

[PMRHortons in reply to PMRpro]

3rd was an attempt at a joke I’m getting such relief from a hot shower I would stay in one from now until the 3rd if I could.

I have previously had a biopsy plus other tests which confirmed GCAPMR. My symptoms at the moment are different to the 2 previous occasions I have had acute episodes. This is the first time I have had joint pain and it is wide spread. have seen my consultant who does not think this is GCAPMR he thinks it is RA hence the PET scan. If I have any symptoms that lead me to think I’m having a crisis of GCAPMR I will immediately take 60 mgs prednisone I have plenty in stock. In any case I am going to take pred with me to hospital and take 60 mgs straight after scan. I see my consultant on the 4th so hoping to get started on treatment officially as it were then. No I would not consider alternative treatment as a replacement just wondered if any one had come across any thing useful to supplement. No antiflamitories and pain killers are not resolving the pain but it is worse without. Thanks everyone for feedback

[Joaclp]

I have PMR and have had RA for over 15 years and also recent dx of bad OA. When RA inflammation is rampant, painkillers and NSAIDS only help some, as they seem to do for you. Both pred and biologics have helped the RA. For me, hot showers help the OA. It sounds like you need a good diagnostician to help distinguish what is what. It is easy to confuse symptoms, however, and my personal, mystical brand of making these distinctions may be no help to you. Good luck and don't wait for this to treat suspected GCA.

[PMRHortons in reply to Joaclp]

Thanks sorry to hear you also have a multiple mix

[SheffieldJane]

Once you are out of danger alternative therapies and the healing attitude that goes with them, can be of great benefit - used as complimentary therapies. Nothing will bring your sight back - nothing. Take great care, x

[PMRHortons in reply to SheffieldJane]

Thanks

[PMRHortons]

So this morning I rang my Generalist and said there was no way I could carry on with the amount of pain and restricted movement I have. Took me an hour to get up this morning. She agreed and has put me on 60 mgs pred for 2 days then 40 for 2 then 20 for 2 and then nothing until my appointment for PET scan on 3 July in the hope pred will not interfere to much with the result. Took pred around 10 this morning this evening I would say I’m about 80% back to normal in fact did a few bits in the garden. The pain is now a dull ache. Just in my hands and knees hopefully be gone tomorrow. I think the fact that the pred has virtually knocked out the symptoms in one day should help specialist with diagnosis