18 months ago, my wife was diagnosed with PMR. At the time, her CRP was 13.7 and ESR was 47. At the time, she could not raise her arms and the pain below her buttocks was so severe she could hardly walk. She was put on 15mg pred, then the first rheumy tried to have her taper too quickly. Eventually her GP put her at 10mg. 3 months ago when her numbers were 5.7 and 25, respectively, she was feeling better but still could not exercise, and the pred was raised to 12.5, but referred to a new rheumy who said it was wrong to have had her taper too quickly. At 12.5 she has been able to exercise and is still in some pain but manageable. However, her new labs show her at 17.8 and 26.
The new rheumy is very concerned that her inflammation appears to be high although her distress is not nearly as severe as when she was first diagnosed. And because the prednisone has taken its toll on her body (huge weight gain, puffed up face that is starting to obstruct her sight), she wants to consider medication thru infusion (IV) or injectable. Before that, she is having her take a blood test called Interleukin-6.
Does anybody have experience with this test as well as this possible medication whose name escapes me at the moment?
Joe
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navejasjoe
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Hi, Joe! I’m sorry to hear that your wife is struggling. Would the drug be Actemra? It was approved by the FDA in May, 2017 for treatment of GCA in the US. I don’t have any experience with it, or the blood test, but if you do a search here, you’ll find past discussions on the drug. I think most of the Aunties (experts) are in time zones that would put them close to their bedtime, but I’m sure one will be along In their morning. They may not have a lot to offer as I don’t believe the drug is readily available yet in Europe
I will say that when I was diagnosed, the Aunties recommended that I follow a low carb diet that includes watching the sugars. It has helped me tremendously with the weight. Alas, i do believe my cheeks have grown. Best wishes for your wife’s health.
That may be the medication. I will do some research in the morning. The rheumy has definitely emphasized to my wife to keep "sugar out of the house". I will wait for the experts here who always have so much useful information to add. Thank you again!
Not only sugar needs to go or be minimal but other carbs like pasta, potato, rice, snacks, etc. Salt also needs to be minimal unless she has been given a medical reason not to cut these things out. Once these things have been cut out, including artificial sweeteners, for a while, the craving goes and an ordinary vegetable like peas taste plenty sweet enough. The good news in a way, is that it isn’t the Pred that causes the weight gain directly but the food we put in which is controllable even if it feels like purgatory at the beginning.
The IL-6 test is perhaps the nearest to a PMR/GCA specific test there is - it has been suggested as a better way of monitoring the progress of treatment. It isn't widely available so that isn't really practical. IL-6 is one of the cytokines, the inflammatory substance that probably is the cause of the inflammatory problems in PMR and GCA. As a humanised IL-6 receptor antibody, tocilizumab/Actemra works on the IL-6 pathway - i.e. it prevents the cytokine "docking" on its receptors and exerting its effect.
Your wife obviously drew the short straw with that first rheumy - you cannot reduce fast, you have seen the result first hand. The GP was also not aggressive enough - they should have put her back to 15mg, got everything under control and THEN tried small reductions. If you don't clear out all the accumulated inflammation first the baseline you are working from is set too high.
The ESR is not outstandingly high - the CRP is high and appears to be rising, despite the use of pred, albeit at a pretty low dose. I wonder if the rheumy is concerned this is GCA that is hatching - in which case if the patient has insurance cover that will pay for it (in the USA it costs about $40K per year including all the bells and whistles) then it is probably the first line approach in the USA now for many rheumies.
As for the weight gain - the others have already broached the approach we push on the forums: low carb makes a signiicant difference to weight gain when on pred, and even allows weight loss while still taking pred. I lost 35lbs by eating low carb while still between 10 and 15mg pred. Now if I eat too much in the way of carbs I gain, not a lot, but I gain.
It isn't just sugar - it is all simple carbs, flour products of all sorts, rice and even too much fruit or root veg must be avoided. Google low carb to find loads of info. There weill be people who say that wholemeal flour products are good - yes, if you can eat carbs and not gain weight. Unfortunately, it is still carbohydrate and every bit of carbohydrate counts towards a daily limit of utilisable carbohydrate. EVeryone is different, I can't eat much carb at all without ceasing to lose weight, the equivalent of about half a small bread roll, and actually for me just veggies take me to my limit.
The good news is that within a very short time on a low carb diet you stop feeling so hungry and the craving for food that pred brings with it for some people fades. It reduces the swings in blood sugar and insulin that cause the cravings and once you get to a steady ketogenic state your body uses the fat depositis to produce energy - not the carbs in your diet. It also reduces the risk of developing pred-induced diabetes - also an important factor.
Thank you so much PMRpro. From your description of IL-6, it certainly sounds like that is what our rheumy has in mind. My wife will be doing that test next Monday. Depending on the results, I think it is Actemra that she was looking at, mentioning how it could be in the $2,000 per month. And, we are in the USA; California to be exact. It may be difficult for our insurance to cover it.
And for sure, sugar is being eliminated. The one carb that my wife will have to work hard to eliminate is rice. She loves her rice but she's been told many times that has to go. Not only for this inflammation, but also her diabetes.
Yes, my recent blood test I was called from my GP surgery and informed I was pre diabetic, so still on 5mg prednisolone daily, I am trying to reduce the carb intake. My Hba1c was 6, so a warning really!
I fluctuate so easily, 2 really good days, followed by one with just a bit extra, and back on it goes!
I'm sorry but I have no experience at all with Interluekin-6 so I can't help with that. I have had experience with huge weight gain on prednisolone though and a way of helping control it is to take on a strict low carbohydrate diet. Also cut the exercising down a little for a while. This may give the body the chance to settle the inflammation a little more quickly. Is the medication that you cannot remember called methotrexate by any chance? If it is I have no personal experience of it, but a friend of mine was made very ill by it, ending up with kidney and bladder damage, because she didn't recognise that she was having a problem.
Methotrexate was mentioned by our rheumy, but she did say that my wife's kidney markers do not make her a good candidate for this med. I believe the one that others here have mentioned is Actemra.
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My wife is the cook in our household.
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