A New Arthritis Hell

[davecov]

Latest update.

My GP phoned me on Monday and assured me that my records would be noted to the effect that I am NOT taking Sulphasalazine. Half an hour after his call, I was phoned again and asked to combine my regular bloods test with a TSH (Thyroid Stimulating Hormone test) that was due on 4th October. Killing two birds with one stone, so to speak. The results of those tests were given to me yesterday. My Thyroid is fine with no concern there. My Biological blood test was normal too. However, my Haemoglobin results whilst stable, are still causing concern. My platelet score was 89 × 109/L whereas the normal range is between 150-400 × 109/L. My GP will be phoning me in the next few days to discuss these latest results.

I am now up to date with my Health Centre blood tests. However, I am still waiting for two sets of results from the hospital Haematology Clinic. The first is the set of extensive tests being carried out on the blood taken at the Clinic on 26th August. The results are due any day now. The second set of results is from the Bone Marrow Biopsy taken on 11th September. I won't get those for one or two more weeks yet.

Next set of bloods is on 24th October and the following week, I am back to the hospital Haematology Clinic on Halloween Day, rather apt if they are after blood again. Same day I am scheduled to have the annual Flu jab! Seems to be a lot going on but I am hopeful that by this time next month I will all know the answer to what is going on with my blood.

Dave

[Jim R]

Sounds as if you're getting there at last. Hopefully the test results will point the way to a treatment that works.

[davecov]

My latest Rheumatoid Arthritis update.

I went to the Haematology Clinic hospital this morning to hear the results of my Bone Marrow Biopsy and the multiple blood test results. To quote the consultant, "my bone marrow is extremely healthy" which is great news indeed and has taken a lot off my mind. As for the bloods, the red cells are fine, but the neutrophils count in the white blood cells is low (1.2) whereas 2.0 is the normal level according to the consultant. She said that it would only be a concern if the count went lower than 1.0. The blood platelet levels remain low but they have put that down to Rheumatoid Arthritis and no other reasons. I have to avoid getting infections and keep away from people with flu. It should be fun this afternoon after I have had my annual flu jab!

The consultant is going to send an urgent letter to my GP telling him to start me on Sulphasalazine immuno-suppressers - at last! Once that starts, I will be going back to fortnightly blood tests. I will give one more update when I have been on the Sulphasalazine for a while, but after that I don't plan to do any updates unless something serious happens.

Thanks all for listening and for your support.

Dave

[Jim R]

All in all that's very good news.

[Richard48]

Thats good to hear Dave.

[davecov]

I didn't think that I would be giving an update quite so soon considering my last post. I finally started taking Sulphasalazine immuno-suppressers on 14th November but on 26th November I was told to stop taking them as my body was reacting badly to them. I had been suffering headaches, sore throat, high temperature and a rash had broken out over my body. My legs in particular were in a bad way. The Sulphasalazine booklet I was given by the hospital said that I should report the symptoms to my GP straight away.

As I had an appointment for bloods to be taken on 26th November, I mentioned my symptoms to the phlebotomist. After my bloods were taken, she reported my problems to one of the GPs straight away. She came back from him, took blood pressure and temperature readings and wrote a report for the GP who saw me within ten minutes. He took photos of the rash which were much worse than I had thought and my left arm was red hot and so swollen it looks like Popeye's! He told me to stop taking the Sulphasalazine immediately and wrote a report for the specialist at the hospital Rheumatology Clinic. I had to wait to hear from the Rheumatology Clinic about the next medication to try but my GP assured me that they will find the right medication eventually but until then, no more blood tests. I told him that I didn't want to try any more immuno-suppressors.

Later the same day, the GP phoned me to say that he has spoken to the Consultant at the hospital Rheumatology Clinic and I have been prescribed antihistamines. An hour later, the Rheumatology Clinic phoned me to arrange a phone call appointment with the Consultant at 1220 on Thursday 28th November and ten minutes after that, the Clinic phoned again to say that the Consultant wanted to phone me even earlier at 0940 the same morning. Of course, I agreed. I had a really good 25-minute telephone appointment with the Rheumatology Clinic consultant on 28th November. I will not be resuming the taking of Sulphasalazine or trying any other immuno-suppressors either. He has seen a big reduction in my Rheumatoid Arthritis symptoms over the past year and thinks I can do without them. I think I can too, providing my condition stays as it is.

My blood results are the same as last month with no problems with kidney or liver and the rash I have should disappear within weeks - providing I keep taking the antihistamines. I have a face-to-face review with the consultant in January but unless my Rheumatoid Arthritis conditions take a big turn for the worse, I won't be taking any medication for it, apart from painkillers occasionally. Although this has been another disappointment in this saga, especially as I had been waiting so long to get on this medication, on the positive side, the service I get from my village health centre has been excellent as usual. Also, my Rheumatoid Arthritis hasn't been as severe as it has been - and that has been without the Sulphasalazine. Rather ironic, really, but it has meant that I have been able to continue making models.

Dave

[Jim R]

Mixed news really. A shame that the medication , which you had been waiting for and had such high hopes for, didn't work for you. Good news however is that it sounds as if you're doing ok anyway. Glad you can get to the bench.

[Tim Marlow]

I had issues with sulphasalizine as well Dave. In my case it was extreme nausea, headaches, and muscle wastage, and I eventually refused them even though it controlled my condition. However, I had been tolerating methotrexate well, even though it was failing to completely control my symptoms, so was moved on to DMARD biologics. The first one failed completely (Adilimumab) which was a shame as I had virtually no side effects from it, and it, like sulphasalizine for you, was my great white hope. The failure led to extreme flares in my condition, which is defined as moderate/severe, leaving me virtually immobile. In turn, this immobility caused me to develop DVT and embolism issues. Due to the nature of these treatments it was about a year before I could get on to an alternative therapy, and the immobility caused clotting. However, I’m now on a nine monthly infusion regime of Retuximab which controls the symptoms more or less, and allows me to function much better than before.
I suppose what I’m wittering on about, is don’t give up too early, and know that there are other treatments out there if your condition starts to degrade. You have tried Sulphasalizine so have met the threshold for moving on to the more expensive DMARD biologic treatments, which are better focused with fewer side effects. Just be very aware that painkillers only mask the symptoms, they don’t stop the progression of the disease, and make a nuisance of yourself as soon as symptoms reappear. Good luck buddy 👍

[davecov]

Another little update.

The rash I had disappeared just before Christmas, thanks to the antihistamines. I had a review with the Rheumatology Clinic consultant on 21st January and he is pleased with my progress. He confirmed that I won't be taking any other medication for it - apart from painkillers when necessary. He was interested to see what my next set of blood tests will reveal as my last blood tests were in November and my white blood cell count and platelet level were low.

Coincidentally, two weeks ago, I received a phone call from the Health Centre saying that my GP wanted me to give another blood sample. This was arranged for yesterday, the 28th January, and I got the results this morning. My white blood cell count and platelet level are still a bit low. However, I was told that my iron levels are now normal and I no longer need to take any medication. My other meds have also been stopped apart from that which I am currently taking for Type 2 Diabetes and my painkillers. It is really good news as I feel far better now than I have done for eighteen months. I do still have issues with the RA but they are manageable - as long as I don't do anything silly.

After last year's rather trying times health-wise, I have decided that I need a holiday and in a couple of weeks I will be spending a week in Copenhagen.

Dave

[Jim R]

Glad your health is improving. Enjoy you much deserved holiday.

[davecov]

I went to Copenhagen on the 17th February and there was snow everywhere and the temperature was -7. Had a good week though and I did visit the Carlsberg factory. I didn't need to take any painkillers and the only tablet I took (Metformin) was for my Type 2 Diabetes. I had a thorough Diabetes blood test last week but won't be getting the results until Thursday next week when I go for a Diabetes review.

Whilst my health is much better, things haven't been going great elsewhere. While I was away in Denmark, my partner Aileen, suffered a seizure back home whilst asleep and bit through her tongue. She has never had one before so it was scary for her. For a few weeks she stayed with her daughter but she has been back home for more than a week now and seems to have made a full recovery. This morning I took her to the hospital for an MRI scan and we now have to wait for the results of that.

My mother is suffering badly from Dementia and may now have to go into a care home. Even though she has two carers in four times a day, the care providers are concerned about her safety. She is very frail and is 95 later on this month but that doesn't stopping her getting bolshy when anybody mentions her having to move out of her house!

Finally, I heard yesterday that one of my brother's had passed away. He was found dead indoors by one of his sons. He had been struggling badly with Glaucoma, Diabetes and polyps and I was surprised he lasted as long as he did. He was 11 months younger than me and although he wasn't a keen modeller, he did try to make a couple of large-scale motorbikes in the Seventies but he didn't the patience to finish them, but I think it was an Airfix Ju88 that finally finished any lingering interest that he may have had in modelling. Ironically, he loved coarse fishing and could sit by a river all day and all night and never catch a thing whereas I didn't have the patience to do that!

Dave

[Jim R]

Glad your own health is so much better and that Aileen has recovered from what must have been a frightening episode. Sad that your mum is in a bad way and my thoughts are with your brother's friends and family.