Visit to Rheumatologist

[Kathrynt18]

Hi all

I had my appointment with the Rheumatologist today as part of the suspected GCA diagnosis.

Glad to say I dont have GCA!

However, she said she doesn't think I have PMR but Rheumatoid Arthritis following a physical examination and symptoms.

Wondered if others have had the same conversations following a Rheumatology appointment.

I've had a steroid injection today, been put on sulfasalazine and told to stop Pred with immediate effect. There is a history of RA in my family (grandmother). Would appreciate any advice/opinions please. I must say even though I've been on 60 mg Pred the past 12 days I have been struggling with pain etc.

Thanks in advance.

Kathryn x

[PMRpro Ambassador]

Although pred often helps in RA it isn't as good as in PMR and if you have joint pain it also makes it less likely it is PMR. 60mg would have reduced PMR symptoms very quickly. What were your ?GCA symptoms?

I had textbook PMR except for no raised blood markers but the rheumy I saw wanted it to be an inflammatory arthritis despite no joint pain or other indications and all the tests he did were negative! 10+ years later still no sign of arthritis.

[Kathrynt18 in reply to PMRpro]

Re the GCA, I had headaches, jaw pain (but waiting to see ENT for potential TMJ) and sensitive scalp. Rheumatologist said headache could actually be a migraine, and I do suffer from these sometimes.

I'm so grateful for all your help PMRpro and if I dont have PMR I shall be sad to say farewell xxx

[DorsetLady PMRGCAuk volunteer]

If you’ve only been in Pred for 12 days you should be okay - but immediately might be a bit harsh.

Stepping down over the next 6-7 days might be easier - by 10mg a day to 10mg then 5mg next 2 days.

So long as you’re off the Pred in under 3 weeks there shouldn’t be a problem.

[Kathrynt18 in reply to DorsetLady]

My steroid tablets ran out today, with no new prescription. So cold turkey for me tomorrow x

[DorsetLady PMRGCAuk volunteer in reply to Kathrynt18]

Ok, well good luck with that....you might find you feel a bit off colour...so paracetamol might help if needed.

I’ve done a couple of short term stints on steroids - but not as high as 60mg on those occasions. ....Or though higher when I had GCA.

[Blearyeyed]

Just remember that your new drug and diagnosis will mean you may need to take extra precautions and self isolate in this current health crisis.

If you weren't advised on that today , have a look at the post put up by Poops that helps you score your risk level and gives advice for what to do based on your score.

Be prepared , with a rapid taper off Steroids and drug change you will feel very ropey for upto a week , or more.

You may even get a rebound of extra pain until your body adjusts to the change in medication.

Give yourself lots of rest and TLC over the next few weeks to help you cope with this.

If you get any side effects or new symptoms as you change keep an eye on them , if you have allergy reactions or symptoms become severe ring for advice on what to do on your current number to access GP or Health Care .

It must be a relief not to have GCA though , perhaps it would be a good plan to also join Arthritis UK and other RA groups on HU to make friends and get advice for your RA.

Take care xx

[Kathrynt18]

I did ask the Rheumatologist about self isolation. She said I dont need to worry about being at any greater risk but to keep myself safe, especially over the next 1-2 weeks. We, as a family, are being as vigilant as we can anyway. When I had my steroid injection the nurse said to take care of myself over the next couple of weeks. X

[HeronNS in reply to Kathrynt18]

If I may make a suggestion. My husband and I are not actually self isolating. Neither of us is on any significant medication at present (my pred is slowly tapering to zero). We still make the occasional quick, careful trip to a store, and we go out, separately, for a daily walk, maintaining 2 metres distance from others. We are not socializing with anyone, not even our sons. In fact we won't even let our sons into our building but if they bring us something or we have something for them we effect a quick, careful exchange outside, and give each other air hugs. Then go indoors and wash our hands! I think these are actually the minimum precautions everyone should be taking at the moment, so please be extra careful as long as there is a threat of covid-19 in your area. It will be more than two weeks.

[Constance13 in reply to HeronNS]

Our daughter brings our shopping, puts it in front of the door and then stands back two metres. We then open the door and talk for about 20 minutes.

[Kathrynt18]

On already doing all that anyway. Have been bright from the beginning. Many thanks xxx