GCA, PR, PAD - Med Combination of Prednisone, Actemra, and Methotrexate.
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Hello, I really hope someone here can provide some hope or assistance for my mum. I'd appreciate it if any-one can share their own journey with auto-immune disorders and how long it can take to go into remission from GCA, as my mum is becoming rather hopeless now.
My mother was diagnosed with Giant Cell Arteritis, December 2017. She had previously suffered with Acute Pancreatitis (October 2016) and Divirticulitis (October 2015) resulting in 11" of colon removed (no bag). She has been diabetic since October 2016 due to pancreas inflammation.
When she initially was admitted to hospital due to nearly going blind, she was diagnosed with Temporal Arteritis and started on 160 mg Prednisone, tapered off to 80 mg over two weeks, then released with instructions to reduce dosage by 20 mg every three weeks, then by ten after that. Long story short, any-thing below 20 mg and she would be unable to walk due to pain in calves. Surgery is not an option to open her arteries as they are too narrow, so doctors added Methotrexate, which did nothing to help, and she has now been prescribed Actemra injections once a week (this week will be one month of being on that medication). She is on 20 mg Methotrexate, once a week, and still taking 7.5 mg of prednisone every day.
The issue is that none of this seems to be helping her. The only medication that even touches her pain is at least 15 mg of Prednisone, but her doctors are all extremely worried about keeping her on that medication (she has been on it for eight months now). Is there any-thing else she can try to help reduce symptoms ? At the same time, her head-ache, shoulder, and neck and jaw pain are back, and she says her eye feels "weird" despite narrow angle laser surgery and strong medications.
The worst pain is concentrated in her calves though. She has to walk in order to bring a bit of blood-flow to her legs or is looking at amputations (she doesn't know this bit yet), but her calves hurt so much after two or three minutes of walking that she can't continue until she rests for five - ten minutes. Going from one end of the mall to the other (a walk that took her five minutes just last year) is now a 45-minute marathon. She has become extremely depressed because she can no longer exercise (was active before) and is terrified of losing her sight still (though doctors keep promising the chances of it are slim). We live in the California and have fairly good insurance through our employer (government job), so these medications are covered, but it's a fight to get them every time. Is there any point in keeping her on these though if they're not helping her at all ?
Please let me know if any-one has experienced any relief from GCA/PR/PAD taking this particular cocktail of meds, and, if so, how long it took to feel better. Thank you in advance for any response, reassurance, or advice.
1 like, 15 replies
pauline36422 TCTori
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TCTori pauline36422
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EileenH TCTori
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Actemra is the new gold standard for GCA - if that isn't helping then there really is no other option for GCA. Even it is a very new weapon in the arsenal.
Was the GCA confirmed by ultrasound or temporal artery biopsy? If not - are they SURE it is GCA? How old is your mum?
If the primary problem in reducing the pred dose has been the peripheral artery disease and the doctors have identified that surgery isn't an option to improve the blood flow then I doubt there is much else they can do. If there is no way of improving the blood flow to the legs then the end result is inevitable I fear. It is very common in diabetics and I would suspect it is a combination of several factors that has resulted in this situation. There may be a bit of narrowing that is due to the GCA and vascular inflammation and that is why higher doses of pred help.
Being on 20mg pred for 8 months really isn't the end of the world if it is the only thing that helps - some people are on higher than that for longer than that. and on similar doses for many years. Though presumably it is making the diabetes worse? And that will make the peripheral artery disease worse.
I'm sorry but sometimes, despite Pauline's optimism - there isn't the answer we would like.
TCTori EileenH
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Thank you so much for your response, Eileen. This has been my fear all along -- that these medications are over-whelming her system, yet not really helping much. I do wonder if the Actemra infusions might be a better option than the once-a-week injections, but her insurance company is likely not approving it.
To answer your question, my mum is 67-years-old, and her diabetes is fairly controlled. The highest glucose reading for her is usually 180, and that is once in a while, if she is under an incredible amount of work or family stress (she hit 230 once last year, and that is the highest it has been since). Otherwise, the numbers usually hover between 87 - 140, depending on how long before the finger prick she had her coffee. She is on 8 units of Lantus nightly, which I've read isn't horribly high.
The GCA was not confirmed by biopsy. I did read that certain segments of arteries might not be affected, and she had been on the very high doses of Prednisone (180 mg > 160 mg > 140 mg) four days before biopsy, so think those may be reasons for the negative reading, but doctors said the Ultrasound did prove it. I have a hard time trusting her doctors as I was the one who initially proposed the diagnosis to the hospital neurologist after fighting doctors in the ER to admit her in the first place, and have been essentially advising her on how to taper off of the Prednisone, or increase the dosage if the pain is back, etc., so I feel like I'm doing a lot of the work as someone who isn't in the medical field while the doctors are just looking at her as a number and not a human-being. I do understand being busy and having a lot of patients, but her doctors simply don't care even when we are sitting across from them. If they don't care, how can I trust they are doing what's best for her ? It's incredibly frustrating.
I almost want to tell mum to quit taking Methotrexate and just increase the Prednisone to 15 mg (she responded to that dosage pretty well), then compare her blood-work results to the ones from a few weeks ago. If her glucose levels stay relatively stable, and her A1C and sed-rates are okay, then it can be assumed that Methotrexate is completely unnecessary and can be eliminated from the cocktail of drugs she is on, correct ?
Thank you again for taking the time and responding. I really do hope my mum will be okay in the end, and that the Actemra will kick in after the fourth dose so she can get a little bit of relief, if only to give her a little bit of hope.
EileenH TCTori
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If she is on Actemra I can't understand why they have left her on mtx - though remember I'm also only a patient, albeit with a lot of background knowledge. In the PMR/GCA world, Actemra is the ultimate steroid-sparer so I would have thought the mtx was superfluous and can be stopped easily - and as Daniel says, mtx isn;t as good as a lot of doctors think. That's why Actemra has been greeted with such delight. BTW, it was found to work better in GCA as the weekly injections.
TCTori EileenH
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Thank you, Eileen. I apologise for a late response, but my lap-top wasn't working, so had to wait to get on desk-top at work in order to formlate a proper response.
I talked to my mum about stopping MTX, so she is going to bring it up with her doctor next appointment. I also told her she should increase the Prednisone to 10 mg, since all of her symptoms are back (most notably, her right eye giving her issues again). I'm also thinking of trying alternative medicine in conjuction with the traditional stuff. Since you have so much back-ground knowledge, have you come across any literature regarding doing acupuncture for symptom relief ? The bit of research I have found has conflicting results for both PAD and GCA, but if it alleviates even 30% of her leg pain, it might be worth trying.
Thank you for letting me know the injections work better than the infusion -- that had been a huge question in my mind, so glad to know she is at least receiving the better of the two options. You've definitely given me quite a few things to think about, so thank you for that.
EileenH TCTori
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Really can't comment on acupuncture - I know one person who found it helped PMR and another for whom it did nothing. As for PAD - no idea. I suppose it is worth trying - but not on its own always in addition.
ptolemy TCTori
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TCTori ptolemy
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Yes...you're right, it's very expensive. The acupuncturist I spoke with is $285 for initial consultation and treatment, which can last from 1.5 - 2 hours. I don't know how I can afford that, but do want mum to try if her doctor doesn't protest it. As you have both said, might as well give it a shot since nothing else is working. I hate this stupid disease.
ptolemy TCTori
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Daniel1143 TCTori
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EileenH Daniel1143
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You'd think so wouldn't you - but you know as well as I do that they are SO wedded to the idea of mtx and terrified of using a bit more pred. Sod the patient and what it puts them through...
TCTori Daniel1143
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TCTori EileenH
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Eileen...exactly !! Her doctors are just looking at her as a guinea pig and not taking into account that the Methotrexate has literally done nothing to help, and they are barely paying attention to any-thing she has to report or say. It's beyond frustrating to find doctors who can take ten-minutes out of their day to listen to and help their patient....
EileenH TCTori
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mtx tends to be used as a "steroid sparer" - it sometimes appears to potentiate the effect of the pred and so a better result is obtained for the same dose. It is disputed - 3 studies showed different things. In some places it is used right from the start along with the pred - but there is no real proof how much difference it makes.
It is an unpleasant drug and the side effects can be too much - even in RA where it is the first line approach about a third of patients stop taking it because of the side effects. Some people have no trouble with it at all - I took it for 4 weeks - never again!