PMR Again

[BooAlan]

I first got pmr about 12 years ago, Took about 3 months to get s diagnosis and correct treatment, diagnosed by a private physio, prednisalone for 2 years and weaned off. Fast forward 8 years, got symptoms again. Another few weeks of agony while GPS dragged their feet, again put on Prednisalone for 2 years. As I am type 2 diabetic told I should come off them. 3 months ago got symptoms again. GP said to get bloods done but there was 2 week wait so I asked for prednisalone, 1 months supply given now he is refusing to prescribed any more! I am so fed up with this, the pain is horrific and I can't do even basic days to day tasks. I am 66 and still working. I just don't kniw where to go from here. Any advice gratefully received. Thanks for getting this far!

[Blackeye-susan]

Booalan not sure I have good advice to give as I am struggling too. I had to get off prednisone due to bone thinning. I went on the lions diet and it really helped and I was able to totally get off of prednisone with just minimal pain in my hips. My rheumatologist x-rayed my hips and found evidence that I have psoriatric arthritis and put me on an infusion of simponi aria. Within 5-7 days I developed an infection on my gum over my left eye tooth. I got it cleared up by draining this sore and gargling with orajel mouthwash. 4 weeks later they gave me the second infusion. Again I developed a new sore on my gum over my other eyetooth on my right side. The infection took off and the dentist had to give me an antibiotic and after 3 dental specialists they have found that I have a bacterial cyst in a rare location between my teeth so a root canal would not work to drain it. They blamed the infusion medicine. I had to get off simponi aria or risk serious infections. The pain from PMR rared up immedicately and has been vicious this time just as you described. I am going to get back on the lions diet. It is an all meat diet and it was what I attributed to helping me the first time I got my PMR under control. You may want to check out one of these diets - Lions, carnivore or Keto. For me the Lions diet helped. But others on this site stated that Keto helped them too. Best wishes.

[BooAlan in reply to Blackeye-susan]

Thank you for your reply. Oh no that's sounds awful, that's all you need on top of PMR. I hope you get sorted very soon. I will look into those diets you mentioned.

[PMRpro Ambassador in reply to Blackeye-susan]

Bear in mind that psoriatic arthritis can present in a very similar way to PMR where it is called a polymyalgic presentation so it was the anti-TNF biologic that relieved your symptoms. It is a shame your first line approach caused such horrid problems - do they think that it is the type of medication or might a change to a different anti-TNF medication be OK? In the UK they usually start with methotrexate, a non-biologic DMARD. There is also a JAK inhibitor which is approved for PsA - also a totally different type of drug.

[Zappata]

I would try a different doctor if that's an option. We're all entitled to a second opinion

[BooAlan in reply to Zappata]

Yes I was thinking that. There are a lot of drs in the practise so I will try and see someone else.

[PMRpro Ambassador]

Hi and welcome!

If trying other GPs in the practice gets you nowhere - is a private rheumy appointment an option? Where in the UK are you? If that is an option, maybe we can recommend a safe pair of hands. I assume you are in the UK but it would help us to help you if you added a bit more info to your profile page.

You really would think that a GP might believe a patient about the symptoms being something they have lived with before for a couple of years!! It does relapse and they should know that.

I know what you are going through - it took doctors 5 years to offer me pred. When I did get it I went from constant pain and disabling symptoms to being able to function in 6 hours!

[BooAlan in reply to PMRpro]

Hi yes I am in Northampton in the UK. I have actually just booked a private appointment with a rheumatologist but not until January. I don't know how you stood it for so long! I find the pain unbearable and so deabilitating. I am taking prednisalone at the moment which is controlling the pain but I dong know what I will do when they run out. Getting a gp appointment is so difficult too. Thanks for your help.

[PMRpro Ambassador in reply to BooAlan]

Needs must - I was in my early 50s and still working but was a freelance translator so just had to get from bed to computer! I did an aquafit class every morning through the week and that helped mobility but the pain was a bit of a *******!!

[Bridekirk in reply to BooAlan]

Surely they will just continue with the prednisilone or adjust your dose when you run out if you are still suffering. ? That's what I understand or am I wrong? I am new here and just starting out with this complicated journey

Anyway I wish you well and hope you get sorted out !

[PMRpro Ambassador in reply to Bridekirk]

Very much depends on the GP and what they know about PMR - and in this case, probably whether they are miffed the patient diagnosed what it was!! Some can't bear not to be in charge.