A New Arthritis Hell

[Dave Ward]

On the Diabetes front, my blood glucose level had shot up

It happens - but as long as you realise the reason & it's only temporary, no real harm done. Watch out for mixers - making a Cuba Libre with full strength Coke can push the sugars up!
What can be troubling is if you are ill - your blood sugars can be all over the place & you don't know if it's your illness, or a diabetic problem - I generally increase my monitoring if that happens.
I keep my sugars stable by routine - eating at the same time. and not really varying my diet ( yes, it can be boring ). Most of all it's being aware, and not ignoring signs
Dave

[Tim Marlow]

Hope everybody had an enjoyable Christmas and a Happy New Year to you all. My latest update on my Diabetes and Rheumatoid Arthritis.

It is now a month since I last took Methotrexate and to be honest I feel better now that I am off it. It never seemed to make any difference except to make me feel ill for a couple of days after taking it. My Rheumatoid Arthritis has been manageable with only occasional flare ups. In fact, so manageable, that I am currently building an Airfix Airco DH4 and will attempt rigging it!

I was in touch with the hospital Rheumatology department to discuss Methotrexate, Diabetes and bloods. It turns out that there is a concern that I have a "low white blood cell count of 3.1" and a "neutrophile count of 1.30" which means that I have a low resistance to infection and disease. Apparently, the low neutrophile count showed up in my blood tests in September but nothing was said at that time.

I am due to begin taking Sulphasalazine but can't take it until my bloods are sorted out. For the next six to eight weeks I have to have full blood tests every two weeks and the target for the neutrophile count is between 1 and 1.5. I also have to have a Colonoscopy at the end of this month and an Upper Endoscopy in February. After all that, I have to be counselled on Sulphasalazine before I can take it and that counselling will take place this month.

Dave

Hi Dave. I know what you mean about the roughness the day after taking methotrexate, but paracetamol controls that quite nicely I find. Hope the Sulphasalizine helps. I found it (along with methotrexate) controlled the RA quite well, but I couldn’t cope with the extreme queasiness I felt all the time I was taking it. It’s why I ended up down the biologics route. You apparently have to have had Methotrexate and Sulphasalizine before you qualify for biologics. Not sure what they can council though? It’s just a tablet twice a day. I was just prescribed them and left to get on with it, but it was during the covid pandemic……..Mind you, it’s a big, dusty, yellow tablet that looks like it would be more at home in a horse, so perhaps that’s where the councilling lies
Perhaps the biologics route is where you are heading? If so, that’s a good thing. They are far more modern treatments that are much more targeted with far fewer side effects. Pity they didn’t work for me really.
Had my first Rutuximab infusion of this year yesterday, by the way…..still on the steroid bounce which is nice :tongue-out3:

[Airborne01]

Keep it up mate; hoping all goes well with you!
Steve

[boatman]

Keep it up mate; hoping all goes well with you!
Steve

DITTO Dave to what Steve said an jen an i hope you get better soon an yes H/B to you both
chris an jen

[davecov]

Just got back from hospital after having a colonoscopy. When I was on the table and the procedure about to start, the surgeon said that the report of my last blood tests were fine. My iron levels are normal and my haemoglobin count is normal too and he said that in view of the tests over the past few weeks, the Methothrexate could be considered as the cause of my abnormal levels and it wouldn't be necessary to have the colonoscopy if I didn't want it. Having suffered for the past twenty four hours fasting and taking Plenvu I decided that I wasn't going to put that to waste! So, it was done and everything was clear. The hospital are cancelling next week's upper endoscopy as that isn't necessary either.

My blood pressure was also normal and my blood glucose level today is 5.0. Good news all round and I have another two sets of blood tests in February before I start on Sulphasalazine, for which I have already received counselling.

As for my Rheumatoid Arthritis, the symptoms are much reduced at the moment, in fact it is the best it has been for months. I just hope the Sulphasalazine will be the missing piece of the jigsaw puzzle.

Dave

[Andy the Sheep]

Glad things are evolving in the right direction, Dave. :thumb2:
I would have made the same choice about colonoscopy: why wasting all those efforts... (reading it back, it sounds weird, almost a pun...:smiling6

[boatman]

HI Dave glad things are goin right for you sir an hope to see you someday carry on with that big dora rail gun
ATB SIR
chrisb

[Dave Ward]

Good news - now you need to have a good long period of stability, so you can fine tune the meds & lifestyle - it may be boring, but much better than the alternative!
Dave

[Jim R]

Definitely sounds as if things are all headed in the right direction. You must feel encouraged and very happy.

[Tim Marlow]

Excellent news Dave. Hope the Sulphasalazine does it for you, but if it doesn’t do as much as you hope there are still loads they can do, so don‘t get despondent :thumb2: :thumb2:

[davecov]

Latest update on my Diabetes and Rheumatoid Arthritis situation. Two days ago I had a three-monthly Diabetes review and I was told that I am in remission, not even pre-Diabetic. As a result my medication has been reduced from three to one tablet a day. We will see how that goes for a couple of months and I could end up not needing the medication at all. Conversely, it could go the other way if I am a naughty boy and the medication has to go up. Despite the good news about the Diabetes, my Rheumatologist has asked me to take daily blood glucose levels due to concerns over my blood results (more on that later). More good news is that my cholesterol level is down again from 3.2 mmol/L to 2.1 mmol/L and in the last two weeks I have lost another seven pounds in weight.

It is not all good news though. My doctor was furious that the hospital cancelled my endoscopy as my blood results are still causing him concern. He thinks that my kidneys may not be functioning at 100%. He had expected to see an improvement after I came off the Methotrexate but the figures are remaining stubbornly low. Thing is, the figures were low long before I started Methotrexate. He has again referred me for an endoscopy which I can expect to have in the coming weeks.

All this malarkey with my blood results is having an effect on the treatment for my RA. I cannot start taking the Sulphasalazine until my blood results are stable. My Rheumatologist is expecting me to start on the Sulphasalazine on the 1st of March but that is dependent on my next blood test which is due on Tuesday. My RA symptoms haven't been too bad generally but my hands and ankles are still troubling me.

Ironically, I have been very productive on the modelling front in the past few weeks and have managed to rig a few planes and done some very fiddly PE work on another model . The downside to all the fiddly work is that the following morning, my hands are almost useless, with very little grip strength. Modelling is then out of the question for a few hours but that has given me plenty of opportunity to go through every room in the house, clearing out the crap that I have hoarded over the years! That has been quite therapeutic but there is still a long way to go.

Despite the concern about my blood results, things aren't as bad as they were. I am more concerned now about my 93 year old mother who has just been diagnosed with Alzheimer's. She lives 380 miles away from me so I can't just pop round, but my nephew and one of my brothers live nearby and they keep an eye on her, do her shopping etc. I am due to go down to see her in April, a visit that was supposed to happen in October but due to my medical issues, it had to be delayed. Fingers crossed I won't have any reasons to postpone it again.

Dave

[Tworrs]

Thanks for the update Dave, and all the best.

[Flip]

Dave,
Just picked up on this thread.
First got to know your work following the ATF Severn Class Lifeboat built - even saved it off as THE reference for my own build.
So, you can imagine my shock as I read this thread! I am glad, though, that there have been tangible improvements.
Wishing you all the best and further recovery,
John

[davecov]

Just been to see my GP and it is not all good news. My diabetes is now in remission and I am managing my Rheumatoid Arthritis quite well, with the number of flare-ups reducing markedly. My Rheumatologist has agreed with my request to hold off taking Sulphasalazine until such time as it is absolutely necessary to take it. There is also good news about my kidneys and they are normal with no need to worry about them.

That was the good news. The bad news is that my blood cell counts remain stubbornly low and my GP and Rheumatologist think that I may be getting a build-up of blood somewhere inside my body. I don't have any obvious signs of blood loss when I go to the toilet, nor when I have had various tests so it is a bit of a mystery. Unfortunately, it means that I have to have another, more thorough, colonoscopy and an upper endoscopy too. The upper endoscopy appointment is on Wednesday, 6th March. Not sure when the colonoscopy will be but I'm not exactly impatient to get it done!

Dave

[Guest]

Dave, thanks for the updates on your health, and apart from some problems you seem to be on the up.
Do not worry about the hair loss, we will accept the rainbow wig as part of your coming out.
And please do not come to my house, I like my hoarding just the way it is, I hate pillow fluffer uppers....
Take care and we will see some more work from you soon...
Now I have to undertake a painfull operation - weekly shopping....