The saga continues...hit a brick wall

[Kern1410]

Hello all!

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! 🌸

[jinasc]

Kern

Are you in the UK...........could not see a location in your profile.

It just might be we know a good Rheumy near you or at the least within one hour. You do need medical help and it is sad to read your post.

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

Not in UK - from prednisone and primary care references.

[jinasc in reply to DorsetLady]

Thanks DL...................must learn to read properly.

If I could add to me existing jinasc I would add UK.

[SnazzyD]

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?

[Kern1410 in reply to SnazzyD]

The pains the same - right temple throbbing and compromised vision and low level pain in left eye.

[Kern1410 in reply to SnazzyD]

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.

[Kern1410 in reply to SnazzyD]

The swelling is pretty significant around my neck and throat. To the point I feel I’m being lightly strangled all day and night! Ugh!

[SnazzyD in reply to Kern1410]

Others have described this feeling on this forum.

[Kern1410 in reply to SnazzyD]

Will taking the water pills, and cutting back on salt and carbs make a decent dent in the swelling?

[SnazzyD in reply to Kern1410]

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.

[Kern1410 in reply to SnazzyD]

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. 😢

[Hidden in reply to Kern1410]

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.

[Kern1410 in reply to Hidden]

I have that too!

[Hidden in reply to Kern1410]

Tying shoes laces etc not pleasant is it. I ended up holding my breath. But it did hurt a bit too.

[Devoid in reply to Kern1410]

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

[Kern1410 in reply to Devoid]

I know it’s the side effects of the prednisone. I just need it to lessen.

[Hidden]

I am assuming you are in the US? Are you near any major hospitals?

[Kern1410 in reply to Hidden]

The neurologist is willing to refer me out to USC or UCLA in Los Angeles.

[cranberryt]

Did they do a biopsy to test for GCA? What was the MRI for? Did they test your ESR? Sed rate?

[Kern1410 in reply to cranberryt]

MRI after being on predisone for 3 weeks dye and no dye. No findings. No biopsy. All markers were normal except one that was elevated.

[fmkkm]

Hi,

Where do you live, what city?

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.

[Kern1410 in reply to fmkkm]

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.

[fmkkm in reply to Kern1410]

How old are you?

[Kern1410 in reply to fmkkm]

49

[fmkkm in reply to Kern1410]

It looks like UCLA Vasculitis treats GCA.

vasculitisfoundation.org/mc...

[Kern1410 in reply to fmkkm]

Thanks! I will look into it and let my primary know!

[SnazzyD in reply to Kern1410]

In order to put you on something else, they must know what they think thy are treating if it’s not GCA (to their mind).

[fmkkm in reply to SnazzyD]

True that!

[Kern1410 in reply to SnazzyD]

They keep pushing migraine.

[SnazzyD in reply to Kern1410]

So I would like a physician to explain how Pred at a certain dose is helping this migraine, by what mechanism.

[Kern1410 in reply to SnazzyD]

Yes!

[cranberryt in reply to Kern1410]

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.

[Kern1410 in reply to cranberryt]

Thanks! Our town and my insurance is pretty limited. It looks like I will be referred to Los Angeles.