Hope your summer was enjoyable! Mine was pretty good until recently.
Part 1: I’ve hit a wall with the prednisone usage and the doctors. I can’t get down below 35mg without my temple and eye pain coming back. I’ve been on the prednisone for over 3 months at a high dose. I did not have many of the side effects until recently. I’ve gained 6 lbs - having troubles with muscles and tendons - mostly in my legs - had some swelling in my ankles and legs. But in the last 3 weeks I have acquired the moon face, buffalo hump and as of Sunday - fluid has collected around my neck. I’m watching my food, doing my normal routine but salt and the extreme heat are not helping. I’m trying to stay calm but I need some help! Why all of this all of this all of a sudden? How can I minimize these side effects? What can I do? Do water pills help?
Part 2: the doctors have signed off. The rheumatologist says my bloodwork shows nothing and says good luck. The neurologist- who I have met twice - says it’s not GCA but migraines (all he did was a MRI - which I was already on prednisone for a while at that point) all he can do is offer drugs or Botox or refer me out (which I’m planning on) I have been so worried and couldn’t get into my primary until today so I went to urgent care. I had seen the doctor there before. They want me to swap meds to get off the prednisone. That’s the only plan of attack.
What avenues do I need to explore now? I haven’t been diagnosed with anything and they just want me to stay on drugs. That’s just a bandaid - I need to get this figured out!
Any help is appreciated! Whether in dealing with the side effects or moving forward.
Thank you! 🌸
Written by
Kern1410
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I hope this is some consolation but I found that the side effects suddenly all came home to roost around this time too. Yes, Pred made me feel weak and weird from the start but the other bits came all at once, it seemed, like moon face, facial hair, swelling eg buffalo hump. I had to have a virtually salt free diet and my carb intake was really low; it was the only way to control fluid and fat. Also, I was not far off 35mg at 12 weeks and that was with no set backs . So, alarming and horrible though this is, you’re par for the course rather than being in crisis.
With your pains, a few questions - Are they exactly like pre diagnosis? When do they occur after reduction? And what sort of reductions do you do?
They had me do quick weekly reductions at the beginning. Currently went from 40mg to 35mg. Having the throbbing and eye issues. Don’t know if I can go down further.
All I can say is that if my food was in the slightest bit salty, eg a sauce or tinned tuna, I would be puffed up within 24 hours and it would take about 3 days to go once the salt was stopped. Again, with low carb, there was no leeway other than a couple of squares of 85% cocoa choc and once at about 20mg I had a couple of glasses of wine per week. I put on no weight and most importantly my blood sugar remained normal. When I went on holiday on 18mg I relaxed this regime and blew up like a blimp. I will say that the general shape you get doesn’t change, just the amount of padding on that shape does.
I’m fine with my original weight and even some weight gain but the water retention is killing me! That and new aches and pain - like my joints and tendons - hard to get around or be comfortable. 😢
To be honest what have you to lose by trying for a few months? My main monster (apart from the hump and swollen face was a roll of fat at the top of my tummy that stopped me breathing if I bent over. Low carb low salt helped that enormously.
Hi I’ve been diagnosed with LVV on ct pet scan ,on 40 pred and 20 methotrexate due to continuing problems, the swelling and strangling feeling is very much what I am experiencing, but not sure how much is the illness or side effects, would be interested in others experience
What was your very first sed rate or CRP result and was it before or after you started prednisone?
Can you go to a different doctor?
I have diagnosed GCA based on my sed rate/CRP and all the classic GCA symptoms. I never had a biopsy. I just don’t understand how a doctor can say you don’t have GCA based on blood test results after you have been on prednisone for a while. You need a 2nd opinion.
I’m in the US - California. My markers were normal except for one that was raised. At the beginning it was symptom based - still is. I have seen my primary, rheumatologist, ophthalmologist and neurologist. They say I’m too young for GCA and I need at least 2 or more raised markers. I’ve had blood work and MRI’s done. Nothing remarkable. The prednisone has reached a point to where they want me off of it and swapped it for something else. But I still have no answers. Just band-aids and no real plan. I’m frustrated and scared.
I have gotten the same runaround due to my age (common in the US because the ACR says you have to be over 50 and drs are taught if you are not it is absolutely not PMR/GCA). I also only have 1 elevated marker (ESR) but all the symptoms of PMR (not GCA). I tried a second opinion to no avail. Returned to the first rheumatologist and got her to at least listen and work with me even though she still disagrees on my dx. I would definitely try to find another ophthalmologist who has experience with GCA and get a second opinion. Another Neuro or Rheumy if you still don’t get answers. The key is finding a dr. who will listen and take your pain seriously.
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