My Arthritis Hell Continues

[flyboy2610]

Praying for your healing, Dave.

[Stratto]

Hi Dave thinking about your journey it can be a long road at least the GP is going to correct the mistake and update your records as it’s very important to have accurate information about you on file.

 

keep struggling on hopefully you can enjoy some good days maybe get some modelling done. 

[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, but after that I don't plan to do any updates unless something serious happens.

 

Thanks all for listening and for your support.

 

Dave

[Pete in Lincs]

Woohoo! That all sounds pretty good and a lot better the last few posts. Congratulations on fighting your way through, and not succumbing to sitting in the corner dribbling miserably. Best of luck on the magic pills and I sincerely hope that you don't have to post on this thread again. 👍

[Stratto]

That puts thing in to perspective and good news that’s great to hear. 

[davecov]

I didn't think that I would be giving an update so soon after my last post. I finally started taking Sulphasalazine immuno-suppressers on 14th November but today I have been told to stop taking them as my body is reacting badly to them. Over the past two days I have been suffering headaches, sore throat, high temperature and a rash has broken out over my body. My legs in particular are in a bad way. The 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 this morning, 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, 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 was much worse than I had thought and he told me to stop taking the Sulphasalazine immediately. He wrote a report for the specialist at the hospital Rheumatology Clinic and I have to wait to hear from the Rheumatology Clinic about the next medication to try. He assured me that they will find the right medication eventually but until then, no more blood tests.

 

Another disappointment 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 get some modelling done.

 

Dave

[Stratto]

Oh Dave such a disappointment for you I hope the find some treatment that works for you at least the health professionals are on it. 
 

on a different note. I have just came back from my pain clinic appointment and no surprise to me but it’s official. I have been diagnosed with Fibromyalgia so now that I have a diagnosis it’s a relief to get that. As no explanation for the pain I am in was getting me down. 
 

I hope your rash gets under control soon and Rheumatology get back to you quickly with something else that might work. 

[Pete in Lincs]

Guys, you have my best wishes for a speedy diagnosis and help with these conditions. 

[davecov]

Thanks, lads.

 

Things have moved on since I wrote the previous post. The GP phoned earlier this afternoon to say that he has spoken to the Consultant at the hospital Rheumatology Clinic and as a result 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. Ten minutes after that, the Clinic phoned again to say that the Consultant wanted to phone me even earlier on Thursday at 0940. Of course, I agreed, although it all seems to be a bit of a blur at the moment! I will be getting another phone call later today to tell me the results of today's blood samples. I wonder what they will discover. In the meantime, my left arm is so swollen it looks like Popeye's!

 

Dave

[Bullbasket]

4 hours ago, davecov said:

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

I lasted less than a month on those tablets. Some very unpleasant side effects. I've been on leflunomide for a few years now, and apart from one small upset, it's keeping the RA at bay.

 

John.

[davecov]

As a result of a 25-minute telephone appointment with the Rheumatology Clinic consultant yesterday, 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. To be honest, 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 a week - providing I keep taking the antihistamines. I have a 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.

 

Dave

[Stratto]

That’s a bit of good news I think hopefully you are on a stable track and can enjoy life a bit more as you have had a lot to deal with. Medication is only necessary if you need it. Fingers crossed that things remain stable. Thanks for your update. 

[stevehnz]

That is better sort of news Dave, I've come to believe less is more if you can manage without them. Its no good when the supposed cure is competing with the ailment in making you feel grotty.

Steve.