More swelling as I reduce??

[Mstiles]

At the beginning of June I was at 25 mg, then had two episodes of ocular migraines and went back up to 30 twice. Then reduced back to 25, 22.5, and now for the last few 4 days at 20. This is the lowest dose since being diagnosed last January and put on 40 mg. Feeling OK, some of the usual withdrawal symptoms.

But my cheeks and especially my neck and under my chin, seem to be more swollen. Anyone experienced this?

I had a root canal in an upper tooth in April,I’m getting this checked tomorrow as I’ve had a few twinges. I’m also getting my thyroid checked, as before PMR/GCA I was treated for Graves’ disease but last labs showed trending the other way towards hypothyroid. Also an A1C test for blood sugar. I was not pre-diabetic at last test, but rusher at the edge of the range.

I’m trying to limit salt and salty foods, but not clear if I need to cut out all salty foods, (bacon? Sausage?, a few sprinkles of salt on my eggs and meat?).

Is there anything else I should be tested for that could be causing the swelling?

Thought my looks are supposed to be getting better, not more frightening!

[Linny3]

Hi Mstiles

Sure sounds like you have a lot going on. I am so sorry you are going thru this, I totally understand and can sympathize. Do you think the ocular migraines are PMR prednisone related? I just had two of them and didn't think about it being related.

From day one of taking prednisone the sides of my neck swelled and I have chipmunk cheeks. I have read it is fat deposits caused by prednisone. I pray all of your tests will come out ok. Hopefully you can feel better and start tapering (slowly). I am at 14 mg and trying to get to 13.

I am amazed how much better I feel when I restrict my salt intake; My feet and legs don't swell as much.

Take Care and Good luck with it all

Lin

[Mstiles in reply to Linny3]

Hi Linny,

My opthomologist examined me after this. she said the ocular migraines were not related to GCA. It was scary because of the GCA diagnosis. They were Probably caused by stress and getting over tired I guess. I had some of these years ago before I got PMR/GCA.

When you say “restrict salt”, how restrictive are you? No salt whatsoever? It just seems weird that I’m getting more swelling, not less.

Thanks Linny

[Jamie345]

I also have the moon face and has spread to my neck be interested to hear what happens with you I presume it's the predisinone I'm down to 12/ halfm just had more blood test as still have inflammation so waiting to hear from my rheumy

[Mstiles in reply to Jamie345]

Hopefully it will go down as I get lower. It just seemed like it was getting worse instead of better as I went down,..,might be just my poor prednisone brain imagining things!

Congratulations on getting to 12 /half.

[Rimmy]

I sympathise Mstiles after having to increase my dose up again. I have to say if blood markers are not obvious indicators and headaches and pains of different kinds can be also 'easily' attributed to other (non GCA) 'causes then possibly we could all just 'soldier on' but maybe at our own 'peril'. The point I am making is that most of us actually do have a fair idea of what is happening to us and what feels like a GCA 'symptom' cf. others and we know pretending it's not happening won't help either and could also have quite serious consequences. An ophthalmologist also told me at the beginning of my GCA journey he couldn't see anything 'wrong' with my eyes but he didn't acknowledge that I had by that stage been on Pred several weeks already for PMR .

Regarding swelling in your face it is difficult to tell if you are just describing our sometimes 'moonlike' Pred face(s) or something more specific - I know my face has expanded again (sigh) quite fast on a higher dose of Pred (30mg). But don't despair ONE day we will SURELY look lots 'better' !!

Best wishes

Rimmy

[Mstiles in reply to Rimmy]

I know Rimmy, the fright about losing eyesight really makes one scared about any visual symptom, and so—more pred. My blood markers have been normal since the initial diagnosis and 40 mg of pred, so no help there in figuring out what is going on.

I have to believe we will look better some day!

[Carol-mc]

Hi Mstiles

With regard to the salt, since my diagnosis of PMR in May have tried to be very careful with my diet, there is a book by Kate Gilbert called Polymyalgia Rheumatica: A survival Guide which has a very good section on nutrition, you can get this on Amazon. Have weaned myself off the habit of sprinkling salt, and feel much better, it does make a huge difference.Have also cut out all salty foods (bacon) and sugary goodies like cakes/biscuits. It’s getting into a whole new way of eating, there’s a lot of information online as well, hopefully might help with side-effects.

[Linny3 in reply to Carol-mc]

Thank you for the suggestion. Already ordered and looking forward to reading it.

[Mstiles in reply to Carol-mc]

Bacon is a favorite!

But I do notice a few days after eating it there seems to be more swelling, especially the lovely eye bags.

[SnazzyD]

Hello, oh dear a lot of things to contend with. Regarding the face, you are not at any dose to expect reduction in ‘the look’. I found that even with reducing from high doses, by 20mg I was more ‘Preddy ‘ as in the accumulation was very apparent like weak muscles, Pred head and especially physical appearance. Sorry to say, my face has only started to reduce below 10mg and at 5mg I can actually see it rather than other people. The salt - bacon was a no no and I had my first bit in 15 months as a treat this weekend. No sprinkles, no sauces, no seasoned meats or veg. I found it made a huge difference at your level of dosage if I made the slightest detour from that and have only just started to reintroduce it in a limited way since being below 7mg because I now think I need it. Sorry, if this this all seems so far away, but you do get there.

[Mstiles in reply to SnazzyD]

Thanks for the details on salt Snazzy D. I’ve always had a bit of the heavy hand with salt, I have done better with sprinkling on food, but not cut it out totally or bacon either! There must be something to make food less tasteless! Have not done enough research.

I will look forward to the 10 mg milestone and less moonface.

[SnazzyD in reply to Mstiles]

After a while the tastebuds adjust to no salt and food tastes again without it. When you go back to salty foods they seem over the top. Also, using herbs and spices add some depth of flavour.

[Mstiles in reply to SnazzyD]

My son suggested Mrs Dash, an old favorite I used to use. Will try to be more creative re herbs and spices.

[Pongo13]

I've mentioned before the numerous things cut out of my diet so won't bore again. What I can say is that I had two sausages at a BBQ Saturday and suffered to an extent that I can cheerfully say "never again". Processed meats for me, are a 'no no' no matter how tempting!

[piglette in reply to Pongo13]

I must admit I have pretty well totally cut out processed meats and almost cringe when people mention them now. Strange how things can change.

[Megams]

~So sorry to read your list of difficulties Mstiles - special thoughts go to you in abundance.

Had noted spikes in my blood pressure towards being on highish side of 150+ as opposed to once being within normal stable range.

Just love my sea salt & have only just cut this out on my veg & eggs so highly likely the source of it being raised - going to try celery salt. Don't eat any processed food & keep diet simple & plain.

Is your neck OK? I ask in light of your migraines which I know well.

Fell down 3 carpeted stairs here at home - my migraines flared.

All OK now as sorted with adjustment by Rheumy today.

Just a thought for you as you find answers.

Blessings to you

[Linny3 in reply to Megams]

Don't forget, salt is salt in whatever form you use it. Maybe try celery seed or some of the powders.

[Mstiles in reply to Linny3]

Thanks Linny, can you tell me what you are referring to, “some of the powders”, some spices?

[Linny3 in reply to Mstiles]

Garlic powder, onion powder

I have started using more garlic than I ever did before as it adds a lot of flavor to food.

[Megams in reply to Linny3]

~Indeed Linny3 but I've always believed the body needs a certain amount of salt. Especially when cramp comes & goes despite using multiple other remedies, magnesium + other goodies~ Yes celery seed is on my list this week~

[Mstiles in reply to Megams]

Thanks Megams,

Yes my neck seems OK, and no more migraines. They are weird migraines, no pain thank goodness!, just short-lived visual disturbances that were scary because of GCA, not related to that according to the opthomologist.

[PMRpro Ambassador]

It will be cutting carbs that will help with the fat deposits that cause the chubby cheeks and neck - and that also will reduce the Hba1c level which I assume you mean is rising to the top end of its range?

There are two causes of the swelling - one is fluid retention and that is helped by reducing the salt content of the diet. The other is excess blood glucose being stored as fat deposits in particular places. If you reduce the carbs enough the body has to start using the fat deposits to produce energy and they will get smaller.

How much salt you should cut out is difficult for anyone to say - there are plenty of articles about the role of salt and how much we should eat. There are other ways of adding flavour to food without using salt in cooking, herbs and lemon juice are useful for example. You can go too far the other way - as Heron will tell you - but if you are eating salty food such as cured meats you probably don't need salt added at the table. There is salt in almost everything that is prepared when you buy it and that is where most of the salt intake comes from. Once you cut processed food - you have cut the salt dramatically. I rarely eat "processed" food at all, I cook from scratch and eat almost no baked goods (I had 1/2 a roll yesterday for a treat). I do eat cheese - and that has quite a lot of salt. But if we eat out I often find the meal quite salty and notice fluid retention - and when we are on holiday and eating out a lot, 2 or 3 days of that means feet like footballs!

[Mstiles in reply to PMRpro]

Yes there is sodium in just about everything. One cup of plain Greek yogurt that I eat with my pred, 150mg, there is also 15 g sugar, (from pectin I guess?, there’s nothing else in it but milk and cream). Salad dressings (150 mg, 2 T), I make some dressings but sometimes buy them. I don’t eat bread, rice, pastries, and rarely legumes.

I do eat some cheese, gives flavor on a salad, or a bit of delicious cheese for a snack....

Is there a recommended daily amount of sodium to help with this fluid retention? Or is it just individual for each.

I cook for my son too, 2 different meals sometimes.

Thanks PMRpro.

[HeronNS in reply to Mstiles]

Fifteen gm sugar is about one tablespoon. Pectin is a fibre which acts as a thickening agent. We need a lot more sodium per day than 150 mg so unless all your food contains salt the 150 mg in your yoghurt won't hurt. I'd be more concerned about the amount of sugar.

[PMRpro Ambassador in reply to Mstiles]

I think it varies from person to person. Know the feeling about multiple meals - OH and eat totally differently!

As Heron says - yogurt sugar is far more concerning than its salt! Have you tried Skyr? I tried it for the first time today - and I really liked it. Less sugar than Greek yog and lots of protein, low sodium. Yogurt sugar comes from the whey I assume but any flavoured ones (Skyr too) have all sorts of junk in them!!! Skyr and Greek yogs are interchangeable when cooking.

[Mstiles in reply to PMRpro]

I will look for Skyr, I guess milk has sugar in it, lactose?

My chemistry class was a long time ago!

Thanks for the breakdown of the two reasons for the moon face. I hope when I get my A1C I haven’t gone up a level into pre diabetes range. Fingers crossed.

[Linny3 in reply to Mstiles]

FDA states; Americans should limit daily sodium consumption to 2,300 milligrams, but this is an upper safe limit, not a recommended daily allowance. Even active people who lose lots of sodium through sweating require no more than 1,500 milligrams of sodium per day. Potassium is needed to balance sodium.

So, while table salt may have about 2300 mg of sodium in a TEASPOON , there are about 2000 mg of sodium per teaspoon if you are using sea salt , and pink Himalayan salt has about 1700 mg of sodium per teaspoon …all because the volume of the salt crystals in a teaspoon are different!

[CT-5012]

Regarding migraines, these are now thought to be part of autoimmune problems. Mine started while I was in junior school, not had any since starting pred (happy bunny). Had both regular migraines and ocular migraines. When I developed GCA the pain was in exactly the same place but then had the rest of the symptoms of GCA. I have now tapered down to 8.5 mg and the ocular migraines have returned in a much milder form, I mentioned this to my rheumy and his response was mmmm. Good luck.

[Canygirl61 in reply to CT-5012]

Dear CT-5012,

That’s interesting, that you say migraines are thought to be part of autoimmune problems. Is this something your doctor has told you, or did you read about it somewhere? Just curious, because I was first diagnosed with Migraine Associated Vertigo (MAV), prior to discovering my positive c-anca (and other elevations). Now it appears that my vertigo is not from MAV. However, I have a history of ocular migraines—haven’t had one in a long while—and never read/heard about autoimmune connection and migraines. It’s amazing to read that many here have ocular migraines. Aside from my optometrist, I’ve never met anyone who has had them. Very challenging trying to describe them to people.

All the best,

Canygirl61

[CT-5012 in reply to Canygirl61]

It was my rheumy who told me of this link between migraines and autoimmune disorders. I was explaining that about a week before my GCA started I experienced, late in the evening, a large grey parch in the centre of my vision (same eye as migraine and GCA) lasted only a minute or so, rheumy said it was the first time he’d heard of this so don’t know if it was linked or not. Interesting that I haven’t had any migraines while on pred until very recently an they are much milder than previously.

[j-e-a-n in reply to Canygirl61]

Hi. I have ocular migraines all the time - no pain, just the vision. In my case it is like looking through a sparkling cut glass circle. I notice it when the sun is shining and it seems to be always there, just don't notice it as much if it is not sunny. My optician told me what it was. I started with the odd episode long before my GCA. I am down to 5 and a half mgs of Prednisolone now, doing the dead slow, stop method, and it has taken me just under 3 years to get this far.

[Canygirl61 in reply to j-e-a-n]

I had my first ocular migraine during my second pregnancy at age 25. I thought I was having a stroke! As you said, like looking through cut glass; I used to say it was like looking through a prism, and it is arc shaped. In recent years, I’ve developed a headache afterwards. I haven’t been diagnosed with GCA—though my doctor was contemplating it. I have temple pain and tenderness; facial discomfort; and, prior to prednisone, suffered with chronic headaches. My temporal artery ultrasound was negative. They (my team of docs) believe I have Wegeners that is causing temporal artery inflammation.

[Mstiles in reply to Canygirl61]

Hi canygirl,

Yes scary when it first happens. I was driving when this happened, pulled over, had no idea what was going on. Opthomologist said it was an ocular migraine.

[Mstiles in reply to j-e-a-n]

Congratulations on your progress!

Are you still having the ocular migraines at that low dose?

[j-e-a-n in reply to Mstiles]

Yes but can only see them when the sun is very bright and also nowhere as long lading as they used to be

[j-e-a-n in reply to j-e-a-n]

Sorry that should have been lasting

[Mstiles in reply to Canygirl61]

Yes seems like there would be some kind of connection since don’t migrines happen because of some kind of interference with blood circulation in the head?

[piglette in reply to CT-5012]

Hi CT, that is interesting, I have had about five headaches in my entire life and nothing like migraines. Is this link only for some people?

[Mstiles in reply to CT-5012]

The ocular migraines I had were years before I was diagnosed with PMR/GCA. They were a weird black and white moving circular pattern that looked kind on like castle battlements that were moving?? Best way I can describe it. They lasted 30 a 45 minutes.

The two I had recently were similar but a gray and wavy instead of black and white. Did not completely block vision, I could see through it.

Stress was definately a factor.

Rheumy and opthomologist said not connected to GCA, hmmmmm

[CT-5012]

My ocular migraines started about a year or so after the classic migraines when I was about twelve years old and I did have a very stressful childhood no explanation ever given other than stress. Many different visual effects many the same as a classic migraine never knew what was going to happen next! All good wishes.