Well I gave the hospital a call and they don't have a cancellation appointment list but they said I can call them as often as I want to check for cancellations.. My GP said he can't hurry my appointment up as they are extremely busy (which I do understand). He took me off naproxen and gave me celecoxib 100g twice a day which only take the edge off after a couple of hours.
I've had horrendous pain in my shoulders and upper arms these past few weeks also a headache and jaw pain , and I've lost 6lbs.
UPDATE
GP gave me a 5 day course of leflunomide (sp) and said he will write to my consultant to hurry things along.
He told me that he can only give me 5 days worth and not to ask for more after a week..is this normal?
Anyway hope you all have a pain free day. Gentle hugs 🤗
PREDNISOLONE not leflunomide guys sorry xx
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EnglishRose63
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Hi englishrose I have just got over a flare up and I was also getting jaw pain in the night we're it seemed to b clicking out of the joint and waking me up last week I went to dentist and he made me a gum guard to wear in bed and it really has helped as it takes the pressure off the jaw so might b worth a try for you x
Hi ER63, Leflunomide takes the usual three months to become effective, so I think the GP is either hoping you get it continued with a cancellation appt within a few days/misinformed as to how it works/ giving it as a placebo. Celocoxib should be given along with Omeprazole to protect the stomach. It is another NSAID, just like Naproxen; both are good for OA.
I found neither of any use (nor was Diclofenac) for RA pain.
GPs are permitted, in the UK, to prescribe painkillers and steroid to see you through.
I too get awful pain in head, neck, shoulders, jaw and mastoid but steroid settles it. Not recommended long term or in high doses, as you likely know. But a taper eg over six weeks, would bring relief almost overnight.
I am on a taper: started 4x 5mg daily for one week, then 3x5mg for two weeks, now on 2x5mg and aiming for a maintenance dose which is generally 7.5mg-10mg daily.
At least your GP is trying to hurry things along for you. Perhaps you might call the surgery and find out when the letter was sent, and also follow up with a call to Rheumatology when you know the letter should be there... don’t let them put it aside! Best of luck.
GPs do not normally actually prescribe leflunomide ....they only sign off the prescription under the direction of a rheumatology consultant. I have never heard of it only being given for five days.
When I was prescribed it I was told if I had to stop it I would have to have a washout as it stays in your body for quite a long time.
If I were you I would speak to your rheumatology nurse and ask her opinion.
As you are expecting surgery it is important what drugs you take.
The regulations used to say you must be attending hospital to have the drug prescribed.....of course that may have changed.
I have never heard of it only being given for five days.
Did you have any tests done?
Do speak to your nurse or the rheumatology team. ....ASAP .
Well, your GP is doing all he's able. Not sure about only being prescribed 5 days of leflunomide, or how he can prescribe it to be honest without the say so of a Rheumy being a specialist med. I'm sure he has his reasons but I’d have thought it won’t do an awful lot with it being a DMARD so not fast acting, as with all of them they take weeks to build out to have any effect. Either way, the celecoxib being a different kind of NSAID to naproxen (a COX-2) will hopefully be more effective but if it isn't why not ask for a short course of corticosteroids (which he is able to prescribe), that should bring down the inflammation quickly as long as you’re not seeing the Rheumy imminently.
Yes, I had a similar experience,when I was first getting referred.The general Hospital was useless they said they didn’t have a cancellation list. Consultant said I needed to be Seen urgently. Appointment said there were no appointments everything was micromanaged.!
I don’t think they micromanagedme very well
Eventually I was admitted into resus. 11 day hospital stay. I now go to the centre of excellence. Hospital for ILD.They have cancellation lists which they manage. You may get an telephone call saying can you come tomorrow. They utilise their resources effectively. I feel lucky to go to this hospital,even though there is no cure for my condition
And I can understand that the GP doesn't want you to stay on it as it would make diagnosis more difficult by suppressing inflammation to a greater or lesser degree. He is correct to wait until you have had a diagnosis but it's common to wait longer than one should have to because of the shortage of rheumatologists.
We are not medically qualified so can only talk about personal experiences so 5 days of Pred. probably won't cause you weight gain, spots, or a problem in stopping taking; so beware of taking this stuff for a lengthy period. It's better to have a steroid injection as it gradually wears off, lasts longer and works very quickly.
I know its hard and waiting times are horrendous but heat pads or cold ones do work in the short term and its vital to stay mobile. I do sympathise but 30 mcg is a highish dose for a short period, don't take for longer as you'll regret it. Tapering is hard and your gp has already said no more so you'd go cold turkey and thats not easy. A case of devil if you do get more and devil if you then need to taper to get off it.
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