Right Temple Pain but Tolerable

[Moaningxcat]

I’m currently taking 35 mg of prednisone and dropping to 30 mg on May 11. My first rheumatologist appointment is May 16. GCA was not confirmed by biopsy but I’m not convinced it’s not GCA or some other type of vasculitis. My head pain along the right temporal was intolerable, which led me to the ER on April 16.

Currently, my right temple hurts, although it’s tolerable, extreme fatigue today, legs and arms weak, and scalp tenderness. If my pain was intolerable, I would go to the ER. Is it safe to wait until my May 16 rheumatologist appointment feeling like this?

Thank you for your thoughts and advice.

[DorsetLady PMRGCAuk volunteer]

Your last post, 4 days ago said you were dropping from 40mg to 35mg in 2 days..so if that’s so, then you’ve only been on 35mg for 2 days… correct?

2 days in on new lower would imply it’s steroid withdrawal - However as you have decreased from 50mg within the space of 10 days - would say you are on too low a dose

Until you can get medical advice [whether than be your GP, the Rheumy or ER ] I’d be inclined to stay on 35mg at the very least. You need advice now, not in 9 days time.

[Moaningxcat in reply to DorsetLady]

I have been on 35 mg since May 4. Script states I go to 30 mg starting May 11 until I see rheumatologist on May 16. I will send my GP a message through the patient portal for enough prednisone to stay at 35 mg until rheumatology appointment. Thank you for the advice and support.

[DorsetLady PMRGCAuk volunteer in reply to Moaningxcat]

No further reduction until you get advice please…

[Moaningxcat in reply to DorsetLady]

I just sent a message to GP via patient portal asking for enough prednisone to stay at 35 mg until I see rheumatologist. This forum has been a god-send. Thank you so very much!

[DorsetLady PMRGCAuk volunteer in reply to Moaningxcat]

good… fingers crossed 35mg is enough to hold symptoms at bay…

[PMRpro Ambassador]

And just to say - I agree with DL. If you still have symptoms, you shouldn't be reducing again. It is a crazy way to reduce the dose anyway.

[Moaningxcat in reply to PMRpro]

Thank you. It’s so difficult right now as I’m in limbo. Rheumatologist will not prescribe anything as I’m not technically a patient yet, and, unfortunately, I do not have much faith in my GP.

[SnazzyD]

whether it is tolerable or not, you have symptoms which isn’t ideal at this stage. I was on 40mg for 6 weeks and needed every one of them even though I had a very fast resolution on 60mg for a week first. Your reduction sounds a bit rapid. If it were me, I’d go back to where I was pain free to see if it helps. Knowing if it is withdrawal as opposed to relapse rather requires the original symptoms not to be there in the first place. This isn’t an ideal situation. Can you get advice sooner?

[Moaningxcat in reply to SnazzyD]

I will try getting advice. I appreciate your thoughts. Thank you.

[Grammy80]

Hi, this forum is a blessing indeed. I am a GCAer also in the States and echo the sentiments of DorsetLady and Pro~! Be cautious and be safe by holding off on any further tapering. It isn't something to want to toy with. I'd had the same GP for years and he new nada, zero, zippo about GCA, even accused me of being 'dependent' on Pred. Sometimes we need it, my best💞

[Gimme in reply to Grammy80]

What a daft thing to say, of course you are physically dependent if you have been taking it for any time. I assume that the GP does understand what adrenal suppression actually means. I wish they wouldn't say things like that to us.

[Grammy80 in reply to Gimme]

Quite a show of ignorance for sure, Gimme . Speaking up is another huge ability I gained from this forum....being my own advocate. In the case of the doc that made it sound like an addiction....I left his practice. Be well💞

[Gimme in reply to Grammy80]

I had the same from the rheumatologist. I came out of one appointment feeling like I was some kind of crack addict. I wont be going back to him.

[Moaningxcat in reply to Grammy80]

It is incredible how insensitive and unknowledgeable some doctors can be…. I sent a patient portal message to my GP yesterday afternoon asking for 8-10 5 mg of prednisone, just enough to keep me at 35 mg until I see rheumatologist. No answer yet. I don’t feel this is an unreasonable request. Looks like I have to call and wait for a call back that doesn’t always happen.

Thank you for your support!

[DorsetLady PMRGCAuk volunteer in reply to Moaningxcat]

Think you should remind your GP your sight could be at risk in your dose is too low and do they want to be held responsible [probably unlikely tbh] - but it might make them leap into action...

[Moaningxcat in reply to DorsetLady]

I did write that I would like to avoid a trip to the ER. If need be, I was going to mention the risk of losing my eye sight. Currently waiting for a call back fro GP office. It shouldn’t be this difficult.

[DorsetLady PMRGCAuk volunteer in reply to Moaningxcat]

No it shouldn't!

[Grammy80 in reply to Moaningxcat]

Try calling the pharmacy and they may reach him or a nurse faster.....that is further evidence of your GCA not being taken seriously. I agree with DL totally! In one incidence when my BC/BS insurance rejected and MRI and wanted me to have therapy, I called and told them if anything happened to my spine 'when a 200 pound gorilla works it', I will hold you personally liable. Approval came in less than 24 hours.

You are doing great...never alone in this journey~!💞

[Moaningxcat in reply to Grammy80]

After much back and forth, I was able to get GP to write a script so I can stay at 35 mg until I see rheumatologist. GP wanted me to come in for an inflammation marker blood test but I told her that I’m not up for it (it’s an 80 mile round trip drive) and I pulled the I don’t want to lose my eyesight fear. I didn’t see the rationale for an inflammation marker test. In the hospital, my CRP was 18.

[DorsetLady PMRGCAuk volunteer in reply to Moaningxcat]

Good to hear senses prevailed…

The rationale for blood test is to see what your CRP is now…compared to last test.. I had mine done about every 3 days in the first fortnight - but had lost sight in one eye, so understandable.,

[Moaningxcat in reply to DorsetLady]

Thanks for the reason about GP possibly wanting another inflammation marker test…

[Grammy80 in reply to Moaningxcat]

So glad you got the script! Isn't there any nearby lab or office where you could have your blood drawn? Is there ANY hospital that could forward the results? The blood tests are important to gauge the effectiveness of your present dosage....and protect your eyesight. I also lost sight of one eye and by close monitoring, they can prevent that. It took me months, and that loss, to get a diagnosis...so you are ahead of the game. Take good care...💞

[Moaningxcat in reply to Grammy80]

I have a rheumatologist appointment on May 16 and I would hope they would be sending me for blood work. My temporal biopsy was negative for GCA, however, I realize that doesn’t mean I do not have GCA. I’m hoping the rheumatologist will be able to figure out, definitely, exactly what I have. Maybe I have some other form of vasculitis. I’m pinning my hopes on rheumatologist and hope they will work with me to figure things out.

[Grammy80 in reply to Moaningxcat]

Blood tests are one the clearest indications of our level of inflammation and are essential. The doctors are using all the tools they have at their disposal. I too had a biopsy, mine was positive, but remember they remove a miniscule section. For you to have a clear picture, he/she should use all the tools in their toolbox. I hope you don't have it either, but I guarantee you don't want to find out by losing some of your eyesight. I hope your visit is satisfying and if you still have questions...tell him. My best.💞

[Moaningxcat in reply to Grammy80]

Thank you for sharing your experiences and for your support. It’s much appreciated.