Very scared

[Plains]

Very scared… I have been telling my doctors about pain in my neck ear and head for months they did an MRI which did not show anything other than a possible old stoke? I have an appointment with a neurologist on Wed. Last Friday I started having pain on both sides of my head above my ears. Saturday it got worst so I called the doctor. He told me to that 40 mg of prednisone, I was at 3 1/2mg. Sunday I had pain at both temples and a pressure feeling. He told me to stay at 40 mg. Sunday night the pain got worst in my temples so I took another five, which helped so I could sleep. Today I got up and he had told me on Sunday to take 20 mg twice a day. Everything I have read says the dose should be more like 60 or higher is GCA is suspected. I have a call into him as the does does not seem to be working. I am worried about my eye sight. Right now no problems but I hear it could happen quickly. I hope he calls back, I just took another 20 Mg to see if that will help. I am very scared something bad is going to happen.

I just needed to talk to someone. Thanks for listening .

[DorsetLady PMRGCAuk volunteer]

You only really need 60mg or above if you have had any sight issues…which you don’t say you have…. But you may need slightly more than 40mg, and in GCA, certainly at outset it should be taken as a single dose.

Hopefully now you have taken the full 40mg today thing should start to settle….if doctor doesn’t return call, do you do you have to the option to ring an hours of hours emergency service - we do in UK, not sure about US. Or if really necessary you probably could take another 5mg… but there is still time for his to call.

I know it’s easy to say, but getting yourself stressed is not going to help.

If you get a response, please let us know what’s suggested

.

[Plains in reply to DorsetLady]

Thank you very much for your response. I will let you know what he says. We do have emergency rooms at the hospital. I think he split the dose because that is what I was doing before at a much lower dose. I hope they do the ultra sound soon. If it show negative I know they will want to do a biopsy. My understanding is both can be negative and you still could have it. My question would be if you have all the signs for it, why not just treat it and not go a invasive biopsy. I had problems with blood clots in the past and really don’t want to have it , if at all possible.

[DorsetLady PMRGCAuk volunteer in reply to Plains]

Know you have an ER -but wondered if there was an emergency telephone facility. A biopsy certainly is a bit hit and miss - they fix g bother with giving me one, it was patently obvious it was GCA ..

A good doctor should treat a patient as if it’s GCA until it is ruled out. It’s easier to reduce Pred if it’s not, than add extra when it’s too late.

As PMRpro advises -if no reply then visit ER

[Plains in reply to DorsetLady]

Thank you both!

[Plains in reply to DorsetLady]

Finally getting the ultra sound tomorrow. Still a lot of pressure in my temples and around the eyes but no actual vision problems. Doc put me up to 50 mg

[DorsetLady PMRGCAuk volunteer in reply to Plains]

That’s sounds like a plan -hope all goes well - and the extra Pred does the trick.

[PMRpro Ambassador in reply to Plains]

Because if the biopsy is positive you have a 100% indisputable diagnosis - which is worth a lot. In some countries you have to have it to get Actemra.

[Plains in reply to PMRpro]

Thank you. I looked up the drug and my plan is going to charge a few thousand a month if I am put on it. I can’t pay that for sure.

[PMRpro Ambassador in reply to Plains]

Absolute cheek - I don't have to pay because we have state-funded medicine but even if I did the pack of 4 injections for the month is under 1500 euros - and the dollar to euro at present is 1:1!

[Plains in reply to PMRpro]

Thank you I will check it out for sure but I am pretty sure it is not covered too much in my current plan. I am going to try and sign up for a new drug plan, when they have open enrollment. If could get the injection in the doctors office my insurance would pay for. The US health care system has a lot to be desired. If I was still working none of this would have been an issue. I shouldn’t have retired early…

[PMRpro Ambassador in reply to Plains]

Would the Genentech subsidy scheme apply for you? Worth asking - they can only say no.

[Plains in reply to PMRpro]

Thank you I will look into this. In the us once your 65 you have to go on medi-care, a government program. I have a secondary insurance that covers what ever they don’t pay. The issue is you have to enroll in a drug plan too. Schedule 1&2 drugs, which until now is all that I take are very cheep. Schedule 3 and above cost a lot more. One never knows what drugs the doctor will prescribe so it makes it hard. I will still check it out but I may not meet the requirements, thanks again..

[PMR2011 in reply to Plains]

If you have private insurance the company has a scheme where they’ll make up the difference and your cost out of pocket is $5. I have been on it for 3+ years and that is all I’ve ever paid. First things first tho, you need a diagnosis. I’ve had 2 temporal biopsy both negative however diagnosed with GCA based on symptoms and off the charts inflammatory markers (which not everyone has). Was on Pred for it for just over a year when tried Actemra. It’s worked well for me. Have been off Pred for about 2 years. Your symptoms are certainly suspicious for it.

[Plains in reply to PMR2011]

Thank you. What you described is my drug plan which goes by tier drugs. I do pay a co-pay but he amount is on the type of drug. Some are 4,00 while others are more. This drug under my plan as I mentioned would be thousands a month at my cost.

[PMR2011 in reply to Plains]

Ah yes, sounds like you are on Medicare. That is a different story. You could talk to your Rheumatologist to see what the options are. I will be facing that next year. I hope to be off it by then, by my Rheumy says there are options if it’s still needed.

[PMRpro Ambassador]

Not so sure about 2x20mg - in GCA at the start you really need a single high dose - or more than 40mg if you are to split.

Do you have an urgent care centre handy or an ER? Not so familiar with your system but that is always an option. But don't keep just adding pred unless it really does make a difference.

[Plains in reply to PMRpro]

Thank you. If I don’t hear back from him today I will go to the ER.

[Plains]

Thank you so very much for this information. So appreciated!!!!!!!