Swollen!

[Hev1964]

Hi there, have been in the 40mg Pred for GCA for a few weeks told to go down to 35 the next week then 30 until first week in March when seen again. The headache reappeared so I put it back up to 37.5 and stayed on that and all seemed well, down to 35 mg today. Am not going to drop as quickly as suggested but will see how each drop goes and monitor as suggested.!However facial swelling is EXTREME, broken capillaries everywhere including eyes and cheeks very bright pink - definite moonface and then some. Then since yesterday I have had three nosebleeds. I have been on 1 xAspirin daily (75) along with pred (apparently cos of eye/bP problems?) and am a tad concerned! I have had life-threatening anaphylaxis reactions in the past (though I know which drug and how it feels immediately and it’s definitelt not that) - but know I can get less severe reactions to other things. Are all these symptoms normal on 35 mg of pred or would it be worth me getting it checked out? All advice gratefully received, thank you :). Xx. Ps: does anyone else have really cold leg or legs upon wakening in the morning? :/

[piglette]

Hi Hev1964, I think you should stay on a dose you feel comfortable with and then reduce from there.

Pred does have some nasty little side effects. I gave up gluten and simple carbs as I had heard that stopped the moon face, it did actually work, but I think it may just have been luck rather than anything else.

Did your doctor suggest aspirin, it is just that it is not that good idea with pred.

<<Using aspirin together with predniSONE may increase the risk of side effects in the gastrointestinal tract such as inflammation, bleeding, ulceration, and rarely, perforation. Gastrointestinal perforation is a potentially fatal condition and medical emergency where a hole forms all the way through the stomach or intestine. You should take these medications with food to lessen the risk. In addition, steroid medications like predniSONE have been reported to decrease the blood levels of aspirin and similar drugs in some cases, which may make them less effective in treating your condition. On the other hand, if you have been receiving both medications and predniSONE is stopped, blood levels of aspirin may subsequently increase and a dosage reduction may be required to avoid toxicity. Talk to your doctor if you have any questions or concerns. You may need a dose adjustment or more frequent monitoring by your doctor to safely use both medications. Your doctor may also be able to recommend medications to help protect the stomach and intestine if you are at high risk for developing serious gastrointestinal complications. You should seek immediate medical attention if you experience any unusual bleeding or bruising, or have other signs and symptoms of bleeding such as dizziness; lightheadedness; red or black, tarry stools; coughing up or vomiting fresh or dried blood that looks like coffee grounds; severe headache; and weakness. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.>>

[Hev1964 in reply to piglette]

Hi piglette, thank you for the reply. Yes doctor took advice from a Consultant over the phone from hospital after eye symptoms - he suggested the Aspirin (with the pred?) just one daily - think concerns over bleed/stroke/eyes the reason?). They knew I was already in omeprazole so stomach (covered) supposedly by that. I got. But concerned when the nosebleeds started though - so will go make an appointment for a chAt in the next day or so. Many thanks. XxxStill curious about the cold morning cold legs - maybe related with Aspirin etc though?

[HeronNS in reply to Hev1964]

I think it would be very wise to get your blood pressure checked, or was that done when you had your eye symptoms checked?

[Hev77 in reply to HeronNS]

Hi thank you for replying. Am already on BP meds but Pred has (apparently) caused it to rise though not too high). X

[DorsetLady PMRGCAuk volunteer]

Hi Hev,

Although the advice on Aspirin seems to have changed over the last few years (in regard to GCA) I took it all the way through GCA, before and after with no problems, and 75mg is a very small dose. However it could be contributing your nosebleeds, so best to get it checked.

I would have thought the cold legs were a circulatory problem, but you don’t mention cold feet or hands - so maybe not! Can’t say I was ever affected by that. Sorry

[Hev77]

Hi thank you. That's interesting to know about the Aspirin I will question if I have to continue with it. Think the swelling must be the Pred and I have to accept it for now though it is extreme :/ Hands and feet are ok and have bad sweating episodes, just the bottom of my left leg, when I wake up, am very aware of it feeling really cold! I anticipate a confused GP when I get an appointment. Thank you again xx

[PMRpro Ambassador]

Facial swelling isn't unusual in GCA - and pred encourages fluid retention as well as the fat deposits. Cutting carbs drastically and no salt helps there - honestly!

Aspirin was formerly listed as a recommendation for GCA, thought to reduce the risks of stroke/vascular events but it has been removed from the newest Recommendations on the grounds that the potential benefits do not outweigh the risks.

Cold lower left leg on waking? Do you develop claudication pain in that leg when you walk?

[Hev1964]

Aw thank you for replying I will share that info tomorrow I have a gp appt. I had pains in the backs of my legs (calf’s) when walking for a few months last year then it seemed to ease - also stopped when I sit down. Disappeared for a few month and just appears intermittently now :/ xx