Moon face and continued swelling.

[ragdollcat4]

I am on 17mg pred.Have GCA since Sept. Really want to get down to at least 10 pred but at each step down I get cystitis, muscle cramps etc. Any suggestions as to what I can do ? My face is red and swollen and now is swollen under the eyes making it more difficult to focus, I have little taste,my hearing is poor, spatial perception makes it difficult to walk/balance.Brain seems clear although memory isn't as good as it used to be. It clears slowly throughout the day so I'm back on form by early evening. The GP felt that I shouldn't change to taking pred in the evening.

[SnazzyD]

Yes, you sound very Preddy. You sound how I looked when I went to Rome when I was on 18mg, not a pretty sight! It is interesting that feel that the cystitis comes on when you drop. I’ll keep it snappy and ask these basic things so sorry if you been there done that.

Puffy eyes - very very low salt in your diet

Cystitis - along with very low salt increase fluid intake to a couple of litres.

Taste - have you been checked for oral thrush?

Muscle cramps- are you taking extra magnesium?

Is your carbohydrate intake really low?

I had a clear brain but a useless memory having been a bright 54 year old the previous year. It did improve with dose. My eyes were so rubbish with disrupted focus my spatial perception was all over the shop and I even got motion sick with the moving scenery when I was too close to things like trees. That went but I can’t remember which level I was on. Hang in there because it does get better.

[ragdollcat4 in reply to SnazzyD]

Thank you so much.

Yes I have a low intake of salt and probably not enough fluid. I'll up my extra magnesium.It's difficult to tell about carbohydrates. I'm reading as much as I can about diet and generally my body feels in great shape - no headaches no underlying illness. I also think that taking antibiotics for cystisis does no good at all so I am trying to live without.

[SnazzyD in reply to ragdollcat4]

I found Pred caused cystitis as in a chemical irritation as opposed to infection. Dilute urine was the only defence. I also found calcium caused it so I had to halve my dose to 200mg. I was so sensitive to salt that I couldn’t have any, not even in a bit of sauce. My eyes were the first place to see the fluid retention. My diet became very bland until I got to well below 10mg.

[Conundrum]

Oh ragdollcsy4 I do not have any expertise.to offer but I can do emphathise. I have been reducing from 60 and currently on 27.5, I too am sore swollen and puffy, issues with balance and no taste at all. I am miserable. Little support from family and friends who have concluded my problems are all caused by pred and not the PMR/GCA . I am so grateful for this forum it helps me so much mentally and emotionally. Sending you love, you are not alone 🤗

[ragdollcat4 in reply to Conundrum]

Thank you so much, I too have found this forum so useful and reassuring. It gave me the encouragement to go out and read as much as possible about our problems and to feel that it is possible to experiment within reason with the dosage of preds. I find that people say "Don't you look well" but in fact these flushed and rosy cheeks that resemble a chipmonk are hardly that!

[Soraya_PMR]

Try some simple analgesia at each drop to help with withdrawal pains.

Don’t panic about the failing memory, lack of concentration and attention, that’s pred blocking parts of your brain involved in making memories. The problems reduce with dose.

What was GP’s rationale for sticking to morning pred?

[ragdollcat4 in reply to Soraya_PMR]

By an analgesic do you mean paracetamol -I'll try that.

That's reassurig about memory and the lowering of the pred dose and that it will come back. I'm turning up either late or early for appointments or classes and sometimes on the wrong day!

The rationale of the GP was I suspect that of the standard reply when the ten minutes was up.

Thank you for your help, its always useful.

[Soraya_PMR in reply to ragdollcat4]

Yes paracetamol. Don’t pussy foot around with it. 2x500mg every 6 hours (max 8 in 24 hours) for maybe the first 3 days of a reduction. That way your blood levels of paracetamol will be maintained at a working level.

I think GP’s get stuck in ‘acute pred’ mode, that given for a short sharp blast of asthma etc. For that use it makes perfect sense to keep to an 8am dose as that mimics the body’s time of highest cortisol. However as we’re going to be on pred for years, our personal production of cortisol is going to cease come what may. Struggle with adrenal reawakening later when it’s necessary. For now experiment with times for YOU. I’m definitely better with the bedtime dose, releasing into my system around 3-4am. Pre pred this was a hellish time, so I know I can blast the cytokines around that time before they do damage. Morning doses give me crappy mornings (stiff/pain) as (my theory) the pred is trying to contain the damage already done for 4 hours of nasty cytokines work! My recent experiment at taking my pred in the morning would have resulted in a higher dose had I not reverted back to evening dose.

[SheffieldJane]

Poor you! I do recognise these symptoms from my higher doses of Pred and Snazzy has outlined some solutions. I was prescribed Ovestin 1 mg cream that deals with vaginal dryness and also helped my cystitis symptoms more than anything else. Drink plenty water, I find that we have to combat dryness in every way ( eyes,skin etc).

These distressing symptoms do pass as you get to the lower doses.

The side effects you are experiencing right now are extreme. I would see my GP in case there are things she/ he can prescribe for you.

[ragdollcat4 in reply to SheffieldJane]

Thank you for your reply. I will give Ovesin a go.

It's all such a nuisance as generally I feel fit.

[PMRpro Ambassador]

I'd say that was a pretty speedy drop for GCA since September.

[ragdollcat4 in reply to PMRpro]

Thank you for your reply.

I am following DL's simple taper and because of this 'extra' swelling I have been thinking I should speed it up a bit in order to get closer to the swelling going down but I assume I must plough on and keep within the 5 week system.

[PMRpro Ambassador in reply to ragdollcat4]

You always run the risk of it dooing the opposite - speed thngs up and you may flare. And need to go back to a higher dose to catch it...