Today I received another letter from the Hospital sent to my GP and cc’d to me detailing what I’d discussed with Dr H last week about my condition and planned treatment.
(Also had a bit of a headache earlier this morning. Not one that hurt, just a little bit of tension running through my head. It if continues today I’ll call the hospital and reduce my steroids tomorrow to 55mg, and down to 50 in 2-3 days, just in case. At the moment my skin is improving quite quickly so maybe I can reduce them now anyway. I’ll play it by ear and change nothing for now, but it’s on my mind.)
It cleared a couple of things up for me that I must have missed at the time as a lot of thoughts were swirling round my head and there was a lot to take in. And there was a request to the GP for me to have my flu and pneumonia jabs and also to arrange to take over bone protection medication and also gastro protection to combat the side effects of the steroids (Prednisolone).
The gastro protection I’m currently taking and seems to be fine is Lansoprazole, and I always also make sure I have something to eat when I actually take the steroids. So my morning routine is take the Lansoprazole, go for a 30-40 minute walk, then when I get back, prepare something like a couple of slices of beans on toast (which I love – thanks mom and dad for getting me onto that as a child) on wholemeal bread, or some porridge which for some reason I’ve never really eaten, but found I like as it comes (unsweetened). That way I figure I’m getting a double helping of gastro protection from the steroids. So far, so good.
The bone protection I’ve already started myself 3 weeks ago in the form of some 2x day vitamin D and calcium tablets over the counter from my local pharmacy. I ain’t dumb. But Dr H has suggested Adcal D3 or similar which again could be over the counter or a stronger prescription only product. We’ll see. I had a quick look online and it seems to be the same as I’m doing now, and I would prefer to be getting this via subscription as I then get it all for one low price with an NHS PPC card for long term prescription medicine users. It’s a bargain and if you’re in a siimilar position to me, well worth having.
I also had it confirmed that I would be on oral steroids for at least 6 months. I wasn’t totally sure about that, but the changes that have occurred through being on the higher dose of 60mg in just 6 days have been remarkable. A noted improvement in my skin and scalp both in terms of redness, soreness, flakiness and just overall feeling and looking better.
Although I’m never going to be happy being on long term steroids, I have an increased hope that I won’t be on them for as long as is currently thought. Of course this all depends on what happens when they’re tapered down (and hopefully off) and whether I get a flare up. I accept I may have to find the right balance as other people have done before me, and that I may end up on 5, 10, 15mg or more to keep my condition stable. But I don’t want ANY and I hope I can drop them by use of steroid sparing agents such as the immunosuppressant MMF or even if I’m very lucky, a mix of Doxycycline (antibiotic) and nicotinamide (vitamin B3). That would be ideal for me given my condition, and relatively harmless.
My eldest son (20) had his gall bladder and spleen removed in his teens after inheriting Hereditary Spherocytosis from my wife and was plagued with inermittent abdominal pains from about 11 onwards and spent 18 months home schooled when he was 14-15. He’s all fine now, but without a spleen it means he’ll have to take a small dose (250mg) of Phenoxymethyl-penicillin each day for the rest of his life. It’s not really necessary to do that and he knows it, so often will “overlook” it for a while until we jolly him up to start taking it again. Now he knows I’m on immunosuppressants, he’s agreed to start taking his penicillin to help protect me from catching anything he might have otherwise picked up. A good lad.
While reading through the letter I realised I hadn’t been doing something that I now remember Dr H had told me to do, and that’s to rub the steroid cream (was an ointment, didn’t suit me) into my scalp as well was my face and body. Okay. But now the oral steroids seem to be making such a big difference, maybe I won’t bother.
Here’s the important parts of the letter summarised and edited by me.
Diagnosis:
Pemphigus Foliaceous
Treatment:
1. Prednisolone increased to 60mg daily for four weeks, then 55mg daily until review in clinic.
2. Mycophenolate mofetil initiated 500mg daily for one week 500mg twice daily for a week, 500mg three times a day for a week, then 500mg four times a day until clinic review (this can be taken in two divided doses).
3. Lansoprazole 15mg daily for gastric protection.
4. Betnovate C cream once daily to the face and twice daily to scalp and torso.
5. Cetraben cream as soap substitute and emollient.
6. T-gel or other coal tar shampoo.
Request to GP:
Please arrange for flu and pneumococcal vaccine when they are available.
Please add in Adcal 03 or other appropriate bone protection.
Please take over prescription for Lansoprazole gastro protection.
Follow Up:
6 weeks with weekly blood tests. The patient has been counselled regarding side-effects of MMF and the need to avoid contact with severe infections. He should employ careful sun protection whilst on immunosuppression to reduce the risk of skin cancer. He is aware to report any concerns regarding side-effects, in particular if he gets any indigestion we may need to increase his Lansoprazole.
Yep, that all seems pretty good to me. Remember that some of this was advised, and some bent to my will at my request, and throughout it all the doctors at the hospital have been brilliant and shown me nothing but concern and care for my well being.
So what has been an initial misfortune for me has turned into damn good luck at getting such a brilliant team of people on my case. Thank you!
