Is the pred honeymoon over?

[babssara]

Started Pred 30 mgs 2 weeks ago - felt fantastic after a couple of days and have done up to Friday night! Now pain, swelling and inflammation left hand excruciating - again. Pain in skull neck and shoulder. Co-codamol doesn't seem to help and have just taken 2nd dose of Arcoxia. Do I grin and bear it, go to GP, up Pred? Not had scans and blood work by rhuemy yet so have not started DMARDs. Any advice would be appreciated. Babs

[lucky12]

Morning babs so sorry you are suffering yes if it was me I would be straight back to gp hope your gp is switched on with pmr there are lots of knowledgeable people on this site who can help.Good luck and and don't over do it rest when poss

[Celtic PMRGCAuk volunteer]

Babs, what a disappointment after such a good response to the starting dose. We could do with a little more information, ie your symptoms pre-diagnosis; GP's blood test results; whether you were diagnosed with'just' PMR or also with GCA? The 30mg dose is unusually high for PMR, but not high enough in the case of GCA to get the inflammation under control and keep it there. Is the skull pain you mention in the temporal areas?

In the case of leaning more towards the GCA point on the spectrum, you would be unlikely to need DMARDs at this stage (Pred remains the most tried and tested treatment), just a higher dose of steroids.

Certainly don't increase the steroids of your own volition at this point - in the case of it being 'just' PMR, a leading expert on PMR/GCA is of the opinion that there is no use in prescribing higher than a 25mg dose.

[babssara in reply to Celtic]

Thanks Celtic. Diagnosis of Palindromic Arthritis and GCA by private Rhuemy 3 weeks ago. Had symptoms of migrating joint inflammation, dizziness, loss of balance and co-ordination for 2 years, resulting in fall from top to bottom of stairs (December last year), shattering right shoulder and arm and cutting my head open. Since then the inflammation in joints, swelling and redness have been more or less constant in various joints at different times. What I call skull pain (not headache feels more like my skull is painful), very painful neck and shoulder has been constant. ESRs have been 79 79 and 38 on last 3 occasions, commenced on short intermittent courses of arcoxia to control flare ups. Prednisolone was brilliant for 2 weeks. Now back to migrating joint swelling and excruciating pain. I have restarted arcoxia (my decision as it was Friday night and no doctors over weekend). Inflammation settled but very sore and swollen left hand. Left sided skull pain a lot easier this morning. Hope this gives you a bit more of a history. Babs

[Celtic PMRGCAuk volunteer in reply to babssara]

Then with GCA you should definitely have been started on a dose higher than 30mg to get control/keep control over the inflammation. I started on 40mg and many other GCA patients are given even higher starting doses of 60, sometimes 80mg.

Arcoxia, a non-steroidal anti-inflammatory drug, is generally contraindicated with Prednisolone due to the extra risk of serious stomach issues, although I appreciate that this may have been prescribed for the Palindromic Arthritis element of your illness - Methotrexate, a disease modifying anti-rheumatic drug, may be a safer option.

Have you got rheumy secretary's contact details or a helpline number to ring tomorrow? My rheumy gave me a telephone number to ring if my symptoms, especially my head pain, returned or worsened following my first appointment with him...but then he was a first-class rheumy with a special interest in PMR/GCA, so perhaps I was lucky. At least if you are unable to contact your rheumy tomorrow, then do see your GP - in the case of any problems with your vision, go straight to A&E.

[jinasc]

Arcoxia (etoricoxib) is used to treat osteoarthritis and rheumatoid arthritis and that should hold it. However it will not hold the GCA - Pred is the only thing and with GCA 30mg is a low dose to start with, normally it would be 40mg or 60mg depending.

You need to get back to your medics pronto.

Also have you checked with a Pharmacists that Arcoxia and Pred are compatible?

What other meds are you taking?

DMARDS won't touch GCA and are a no no when on pred.

[Celtic PMRGCAuk volunteer]

Sambucca,

"DMARDS won't touch GCA and are a no no when on pred."

DMARDs such as Methotrexate, Leflunomide, Azatheoprine are often prescribed when on Pred. Are you perhaps confusing DMARDS with NSAIDs?

[PMRpro Ambassador]

Do not take too much of the Arcoxia - it doesn't mix well with pred - and go back to the doctor. It is an NSAID - there is a bit of confusion here, NSAIDs are Non-Steroidal Anti-Rheumatic Drugs such as arcoxia, aspirin, ibuprofen and so on. DMARDs are fine alongside pred and are often combined with it, they are Disease Modifying Anti-Rheumatic Drugs such as methotrexate, azathioprine etc.

If you have GCA the only thing that will manage it is pred, and I would have thought at a higher dose than 30mg. The symptoms you are describing are more likely the palindromic arthritis and proper medication is needed, but not just randomly.

[babssara in reply to PMRpro]

Hi again, nuisance Babs here with an update. Been to usual GP this am (he was the GP who referred me to Rhuemy with suspected palindromic rheumatism). Loads of faith in this GP. Told me to increase Pred to 40mg. Only take arcoxia when pain gets too bad (worried about ulcer). Told me that bulging veins in hands and arms (arms like Madonnas) is vasculitis. He is worried about my breathing again, 4th lot of a/bs in 10 weeks! For past 2 years keep getting these persistent chest infections. CXRs always ok. Told him about head pain. He is going to speak with Rhuemy to see if I can have scans asap. Thanks for reading. Babs

[babssara]

Hi thanks to all of you who have been brilliant will your information on NSAIDs and DMARDs. My Rhuemy was on holiday last week but back tomorrow I have e-mailed his secretary to let him know the problems I am having in trying to get an urgent appointment. My GP said if I have not heard back from him by Tuesday he will ring him direct. My GP doesn't know about my flare up, only started Friday evening. I am not supposed to take NSAIds as I have had a perforated Duodenal ulcer in the past. Rhuemy said not to take Arcoxia, new GP (not my usual one) said I can take them intermittently as long as I take Omeprazole (which I take every day anyway). I just hope I get to see Rhuemy soon. Babs