I couldn't meet the challenge. On it for 5 shots. I felt so bad I just couldn't do another shot. Spoke with drs assistant and she especially didn't like my getting the awful headaches. So, she said go off of it. After conferring with the dr., they think I have something else going on and want to treat for RA. I don't understand as I don't have any blood markers for RA.
Also, The actemera is suppose to actually help the pmr and I feel it made it worse.
I had so many of the side effects listed, but the dr. didn't agree that it all came from the actemera. That is odd as I feel so much better this week and I didn't take this weeks shot.
I denied the first medication that was offered. It was going to be an infusion of retuxin. (only way that can be given) They wanted to do that with actemera and I said no I would do the shots. I figure since I am so sensitive to all of these medications they would kill me or make me mighty sick if they infused a 6 month dose of it into me. So glad I didn't let them infuse the actemera.
Now they have chosen Orencia as a weekly shot. Sure wish I was more successful getting the pred. lowered on my own.
Have the best day possible.
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Linny3
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I was interested in today's talk on the PMRGCA Open Day Zoom by Vanessa Quick - in passing she said something like "taper as you and your doctor agree" - in other words it's a joint effort (as the NICE guidelines state it should be.
Sarah Mackie told me she also works on shared decision-making. There is an impression that senior women feel less threatened than many male consultants. I do also know men like that but I think they are generally a similar generation to those women.
I have a theory that many chose rheumatology because they thought it is a cushy number - no weekends, no night shifts, no emergencies. But then they discover that they can't cure their patients, which is what they think they trained for. Nothing glamorous, nothing to celebrate. Mainly women, complaining of joint and muscle pain. They get bored, disillusioned. And some take it out on their patients, especially if the patients have informed themselves and ask questions.
That is always helpful. Mine is a woman also probably in her 40's and I have always really liked her. I think now she is getting exasperated as what to do with me. It isn't helpful that I only see her 1-2 times a year. Everything has to go thru her assistant. I like her too but it is like playing the old game telephone trying to get a point across accurately.
She is one of the "unthreatened" consultants. So is Vanessa Quick. I'm fortunate to have an "unthreatened" male rheumy! Rod Hughes at Chertsey and Saravanin in Gateshead are too.
All of this, 100%. My last visit to my Rheumy, he said if I can't get down to 9mg by my next appointment with the taper he gave me (which was too fast) on my own then we ought to start thinking about biologicals (injections). Now..my bloods weren't returning results that high (as it turned out I had bursitis in my shoulder which was probably affecting them) and I was doing a nice steady taper with no issues. Tomorrow I see him again, and I am on 10mg with no side effects. He wanted me on 9 by now and if he suggests other drugs to be added I'm going to flat out say no.
I'm contemplating just referring treatment back to my GP who has been learning about this alongside me, and is now much more open-minded regarding slow tapers and using diet as an assist.
I'm sure it is their fear of pred that makes things difficult for many patients. Plus an assumption that because some patients only have PMR for 2 years that should apply to everyone.
Actemra was developed for RA around 10 years ago. Then they trialled it for GCA but you still had to take Pred as Actemra is basically a steroid sparing agent and does not replace pred - so I cannot understand what your medics are talking about at all.
The aim of Actemra is to help the GCA into remission quickly and overall reduce the need for longterm pred.
It is relatively new for use in GCA and you need to fill in a Yellow Card scheme (free at all Chemists and free postage). This then enables them to get to know the full side effects of any drug and especially a new one and what patients experience, this is how you get a list of the common side effects when patients fill in that form.
They believe I have pmr ,however they also think my body is in a constant state of inflammation. That's why they want to treat for RA. Of course they don't want to up the pred any more if they can help it. 15 mg seems to be the best dose to keep symptoms at bay.
But, I have been on it for almost 4 years and it is time to try something else along with it. Also the pmr keeps flaring and I have had to go to 20 mg for a week and try to come back down which always takes me a long time to do so.
Can’t offer any technical help here but I can say it is difficult when you know how sensitive you are to drugs when docs think it is disproportionate when you resist. I’m the same and have to go through the usual routine of standing my ground worrying about which pigeon hole I will be put in, mad woman or over dramatic. I have literally avoided acute harm and probably death by sticking to my guns, only later being told it was lucky that....
Sometimes they make me think I am a weak person, I am not, or don't know my own body.
Yesterday I got tired of trying to explain to them what was happening. The minute I sensed they had their mind made up I quit talking and just agreed with them. Now I have to decide on the next medicine which will have even more horrible side effects.
I ope it works. I went from 9 after 21 months to 50. Lost part of my right eye sight. Rheumatologist want to try actemra to speed reduction in prednisone. Fingers crossed.
History. October 10, 2018. Flashing lights in Left eye. Locked jaw. Diagnosed w GCA. biopsy Confirmed. Three days at 1000 mg prednisone Then 60. Gradually reducing to 9 by July 5 2020. Left eye started to cloud on edge. Off to emergency. Optic nerve was severely inflamed. Swollen and white. No blood getting through.. no symptoms besides cloud. No pain CRP was 7 . Not dramatically bad. So then Up to 1000 for three days. Then 50. Now at 42.5. And on my way to actemra this month.
It is true, Actemra tends to work for a little over half the time with GCA which means there may be more than one mechanism causing inflammation. Because it’s not working does not mean you don’t have PMR. Tough spot to be in.
Hope you are able to get answers and get on the right course.
Lnow what uou mean I felt so much better once off the pred felt really good for at least six weeks then hit the wall again and seeing as I'm to young to consider retirement working in front line job involving security pf a sensitive nature I have to resume the all be it only a small dose of 5mg daily reducing down every six weeks I do not like the pred gives me really bad mind fog and unable to concentrate properly.
There are side effects to all drugs and it's important to be aware of them. It's a bit extreme to say this causes liver failure. It may affect how the liver processes the drug. We campaigned for this drug to be made available to patients with returning and refractory GCA - it doesn't work for everyone but for those that it does it is invaluable.
Members of the charity can read about one member's experience with Tocilzumab (Actemra) in the current edition of our magazine NewsWire.
The info on liver failure came from a non-clinical immunologist, and evidence that the incidence is rare, but has caused a need for a liver transplant. Agreed so does paracetomol cause liver failure, which is why some suicides choose it.
Absence of blood markers does not always mean absence of RA. It is possible to be serum negative. Also, although RA is inflammatory arthritis, not all inflammatory arthritis is RA. So, short answer, it is possible that you have inflammatory arthritis even though your blood markers do not show it.
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