Advice before next appointment with my rhuemy please

[Sandybo]

Good morning friends. I would be glad of some advice before seeing my rhuemy next week if possible. I last saw him in November when I had been on 10mg of pred for 4.5 months, he was very pleased with me, and suggested I stay on 10mg for the next 6 months when he would review me again. He spoke of hoping to start me reducing by 1mg a month. I have been reasonably well on 10mg since then but perhaps ought to give you a brief insight to what I've had to cope with in the meantime. Stressful time leading up to Christmas to be expected. Bad throat all over Christmas so a visit to my GP at end of December, throat infection needing antibiotics. Got worse, GP again in a weeks time, chest infection, change of antibiotics, better by mid January. At the same time I had my brother staying with us, he has learning difficulties, lives with my sister, I am her respite carer, had serious health issue while here which meant a change of diet and more medication on top of what he has to take regularly. I had to keep record of his eating and drinking (water, too much to explain) this is on top of sorting my own medication each day. February, my little dog of almost 17 years was taken very poorly and had to be put to sleep, very upsetting. March, youngest daughter had twins, lovely, but had to be rushed 110 miles away as no neonatal beds at local hospital or any other near ones. All fine eventually, plus it helped me with having lost my dog. Busy as they live next to us on the farm so I've been helping with washing and some meals to make sure my daughter can keep up her milk supply! I developed a neck problem in the New Year, right side only and apart from 2 nasty episodes it usually improved as the day goes on. GP gave me ibuprofen gel ( no help) and organised physio, also not much help. Looking back I'm pretty certain it was all stress induced, I still have the neck problem also my right shoulder is painful at times, this I realise is after I've cut the grass or pulled a few weeds, and sometimes the shopping bag being too heavy, I have addressed these problems by spacing out the amount of grass I cut at one time and have had help with the weeds. I sleep fairly well these days, not so many side effects with the pred, but I need to have a sleep/ rest after lunch each day. My Hb and MCV levels had been dropping resulting in a endoscopy and colonoscopy in March, I was diagnosed with suspected mild iron deficiency anaemia probably due to my medication, by the gastro consultant, and my GP was advised to start me on iron sulphate after the procedures had taken place. The colonoscopy was all clear but 4 biopsies were taken from the endoscopy and I have to have a second one mid July. I've been on iron sulphate in the meantime. So, the advice I would like is, I want my rhuemy to let me use PMRpros DSNS method of reducing, he was very understanding a while back when trying to put me on methotrexate and I said I didn't want to take it, hopefully he will listen to me again. I am wondering, if he agrees, should I reduce by 1mg or 0.5? Or might you suggest 1mg down so far and then change to 0.5? I want to be prepared with what I need to say to him when I see him next week. I'm a little concerned what he may say about my aches and pains as I have seized up a little these past few months. Really sorry my post is so long, but I know that some of you like to have more details about certain situations. Almost forgot, my CRP & ESR have been very good all this time, CRP at 5.9 in March but 1.9 and under the rest of the time. ESR was 19 at the highest and lower at other times, the last 2 months coming back at 8. I've got PMR and GCA with large vessel involvement. Thanks to those of you who might take time to read and respond to this. Sandra.

[DorsetLady PMRGCAuk volunteer]

My goodness Sandra,

You have had a lot to cope with, and still managed to come out the other end as you have. Well done.

If your Rheumy is as understanding as you say, I'm sure he will agree to a slow taper. You probably will be okay to start off at 1mg drops, but once you get to around 7mg if you're not fully confident then you could go to 0.5mg drops. Certainly once you get down to 5mg a smaller taper is much more sensible.

Your readings indicate that your GCA/PMR is well controlled at the moment, so don't let that influence his decision to make you decrease more quickly. You want to keep those readings as they are, so impress upon him that YOU would feel happier reducing slowly. After all, all the paoerwork says the decisions made on reducing should be in the patient's interest.

Doctors sometimes forget that!

Good luck next week.

[Sandybo in reply to DorsetLady]

Thank you very much Dorset Lady, for wading through my post and replying so promptly, you've boosted my confidence!

[PMRpro Ambassador]

The DSNS taper was thought out so I could reduce 1mg at a time - I can't cut my tablets as they are coated. The only way to find out is to try - if you feel yuk on the first few days you try the new dose with a 1mg drop, try 0.5 instead. You sound to have a good rheumy who will listen.

I know a couple of GPs have had a fit about it being too slow and the patients are on too much pred for too long. It actually makes one month difference - but makes it a lot more comfortable.

[Sandybo in reply to PMRpro]

Many thanks as always PMRpro, ever to be relied upon!

[AliDeJ]

Hi Sandra, You have so many other people to think about! So much stress. Glad that others can help with your main questions- just wanted to pick up on the Ferrous Sulphate Tablets you are taking...these are the bog standard cheapest iron supplements the NHS prescribes and they have unpleasant side effects for some. I was very pleased to learn that Ferrous Gluconate does the job and costs only a few pence more, can be prescribed or bought over the counter, and is altogether gentler.

[Sandybo]

Hi AliDej, thank you for taking the trouble to reply, and for the information about ferrous sulphate tablets. I don't seem to have had any side effects from taking them, however, due to some meds causing absorption problems with others, I find it more difficult fitting the ferrous sulphate in with my other meds especially as they have to be taken 3 times a day! I intend to mention this to my rhuemy when I see him, but I may have to wait for the results of my next endoscopy first. Good wishes to you with your health.