The disease from HELL!

[Brian Ellis]

Have just had the worst hospitalisation experience in my life. An extreme attack of combined polymyalgia rheumatica and temporal arteritis.

I would not wish it on anyone's worst enemy. I normally have a good pain threshold but this lot had me literally screaming. Before biopsy of the artery, they could not give me anything stronger than my limit value of paracetamol (phenacetin) calculated at 6 g/day for 90 kg BW at 1 g every 4 h plus codeine injections. These brought the pain and fever down to (just) tolerable levels. At that point, it was non-diagnosed as PUO (pyrexia of unknown origin), which is very helpful. The administration of better medication was not possible before the arterial biopsy (unpleasant under local), as it may confound the latter, even though they were 98% sure of the Dx, but I was put onto cortisone the night before: the following morning, I felt as right as rain! Am now at home, feeling tired but fine, pending the biopsy results next week.

There were moments that I would have considered eating the barrel of a gun if one were available.

I suspect, with hindsight, that this has been creeping up on me for a year of so with various symptoms including the peculiar eye improvements that I mentioned in another thread (that is one symptom I would like to keep, but don't suppose I can! )

Anyway, am still alive and kicking, if mentally and physically diminished, hopefully temporarily, through lack of nutrition over a week or so (lost ~5 kg).

[VJ]

Wow... Sounds indeed terrible...
Glad to hear ou are back home: if conditions allow it, it is the best place to be.
Good to hear things are improving! Hang in there!

[cjolley]

Wow.
Glad you are feeling better.

[Dr Mordrid]

It's not unusual to have both of those together, and singly they are enough to make one suicidal. A lovely gift from your immune system

Jeezzz....

Glad you're better though.

[Elie]

Glad to see you are ok Brian! Hope it never comes back!

[Fat Tone]

Sorry to hear you had to go through that Bri, but glad you are back with us and wishing you a rapid return to full health.

Cheers,

Tony.

[Brian Ellis]

Thanks, all! 12 bloody pills/day, hardly any room left for food and I rattle as I walk! Still a bit wobbly on my pins, but I'm walking the dog round the house (about 70 m with detours to suitable trees) several times/day as a start but even that is almost my limit for now.

FT: Maybe the cortisone treatment will make you 2nd Fat Tone, as I may become 1st Fatty (not if I can help it!)

[Fat Tone]

I think I'm safe. The Cyrpus Health Service couldn't afford that much cortisone

[Brian Ellis]

Update

It is still hell, but in a different way. The ESR has now dropped with the corticosteroids from 89 to 6, which is good and means the disease itself is under control. Have or have had the following problems.

1. First and foremost: muscular atrophy. Lost 24 kg since first symptoms. This makes me very weak and the muscles across the lumbar region have caused crippling spinal problems. Daily physiotherapy and am having to wear a spine-supporting belt. Walking limited.

2. Second worst: chronic insomnia (I refuse sleeping pills but have just started on the next worst thing, Valium, which helps also the back muscle and other pain somewhat; for last two nights have had 4 hours good sleep each :-) )

3. Haemorrhoids which have propped the anal sphincter open with imaginable results. Eat like a horse, cr*p like a cow! Now under control.

4. Urinary blockage AND incontinence. Piddling in small trickles with little sensation of what is happening. I think I'm beginning to master this, but early days, with the aid of more drugs.

5. Cataract in right eye: very slow progress despite the drugs. New glasses OK. Corrected vision still 20/18, no problem. Doc says at least 6 months before op. Can still switch dominant eye without glasses between distance and close-up, although the myopia is just beginning to becoming slightly blurred.

6. Have started on phase-down of corticosteroids Prednisone; down from 60 mg to 50 to just on 40 mg. Hopefully other symptoms will follow suit.

7. Touch wood: no immuno-depressive problems (doc was apprehensive of risk of pneumonia in a recent cold snap, but weather now improved). Gave me Lasix (loop diuretic) to keep lungs drained.

8. No excessive blood pressure, usually 120/130 over 65/75

9. Have not yet started blood sugar as instruments here cost nearly €100 with 20 strips. Have ordered from UK at GBP 45 with postage and roll of 50 strips. Last test was 117 (110 recommended limit, so am not over worried.

10. Ultra-high fibre diet, low carbs, high protein (Hgb was very low but is recovering), high salads and other crudités (plenty raw carrots and celery in season plud a plethora of top-class citrus fruit (8 vareties from own trees) many bananas to push up electrolyte balance, minimal salt. Diet was incompatible with 3. above, as may be imagined.

11. Touch wood, no stomach upset as is not uncommon with corticsteroids.

Otherwise, everything in the garden lovely!

[Fat Tone]

How's thing now Brian? Improving I hope?

[Brian Ellis]

Thanks for the enquiry. With my 18 pills/day, am now managing a more or less normal life, although very weak. Have now phased down the corticosteroid to 20 mg/day, so side effects have become much less pronounced. Worst part is getting up in the morning, with excruciating spinal PMR pain until I'm really up and moving around. TENS electrical treatment helps but have had to cut down on physio which caused more pain than it helped.

ESR is normal at 6 but CRP is still high, indicating inflammation somewhere, but it does not say whether it is because of the spinal pain or a new bladder infection (the beauties of autoimmunity diseases!).

Eyes still OK, no problem with new correction for right eye, but I may need a new lens in 2 or 3 weeks,

With the reduced steroids, sleep is better, but I take a nightly 2.5 mg of Valium for muscle relaxation. I usually have a wake episode for 15-30 mins every 2 hours during the night, but that is tolerable.

Hospital visits down to 1 each every 4 weeks to pathology, urology, cardiology, rheumatology and ophthalmic departments, which is a blessing, as it is a 30 km drive in each direction..Of course, it is impossible to co-ordinate 2 or more services on the same day!!!!

Am walking better, but with occasional lurches like I'd been too liberal supping from a bottle. Very difficult picking things up because I can't stoop, of course, and there is not enough strength left in the legs to straighten the knees: I have to 'climb' the legs with my hands.

Anyway, great improvements thanks to corticosteroids and, touch wood, no problems with gastric ulcers, blood pressure (drug-controlled), usually about 125-135/70-80, or blood serum glucose (generally about 5 mmol/l before breakfast) and bone density seems OK, so major side-effects seem under control.

[Fat Tone]

Still sounds pretty nasty but going in the right direction. You seem to be positive about things which is some of the best medicine! Best of luck beating all of this.