discussion A New Arthritis Hell

[boatman]

HOPEIN for the best for you Dave from us both
chris an jen

 

[Tworrs]

Good news there Dave, good luck.

 

[Tim Marlow]

Finally getting there then Dave. Once you get on sulphasalizine and things start to settle down push your GP and Rheumatologist for remedial physiotherapy. You will have lost a surprising amount of muscle tone and a properly targeted exercise regime will help you regain that more quickly. Something else to bear in mind is that sulphasalazine use means you meet the NICE threshold for transfer to biologics therapy if it doesn’t work as well as expected. This is a more expensive treatment that they cant use initially due to cost. However, it can be more effective and have less side effects so don’t be shy in pushing for it. Looking forward to you building again soon though.

 

[Jim R]

Things seem to be heading in the right direction Dave and that's great. I hope things move along as quickly as possible and a new regime of medication does the trick.

 

[davecov]

My situation hasn't changed since my last update. Although my mid-June blood test results were "stable and improving", my GP didn't contact the Rheumatology department as expected. However, I have given another blood sample today and if these results are okay, my GP will be contacting the Rheumatology department next week. He will be phoning me on Tuesday morning to discuss my situation.

I really can't wait much longer to start the immuno-suppressors. Life is pretty grim right now and I have days where I cannot grip anything and the pain is intense. However, I have managed to do a little modelling over the past two weeks so things aren't all bad.

I did have a bit of good news though. On Tuesday I went to the hospital for an Abdominal Aortic Aneurysm (AAA) ultrasound scan. It is a service open to all men aged 65 and over. Anyway, within a few minutes I was leaving the hospital having been told that my Aorta is perfectly normal and will outlast the rest of me! I don't need to have further Aorta scans so that is one less thing to worry about.

Dave

 

[Tim Marlow]

Hope this gets sorted out to your satisfaction Dave, it seems to be taking a long time. Word of advice though, don’t be afraid to chase them up relentlessly. As soon as you have spoken to your GP contact rheumatology and tell them what he says and push for the go ahead to start immunosuppressant treatment. When you get it, contact your GP again and tell them approval from rheumatology is coming. Your GP will be in control of the repeat prescriptions and regular blood tests, and this proactive approach could save you a couple of weeks.
At the start of my diagnosis I found the communications lines between my GP and my rheumatologist were not great due to my geographic location (my GP is in one trust area and my rheumatologist in another, and the respective data handling systems they use are not compatible) so I ended up as the information clearing house, ensuring communications transfer between them was timely and acted upon. It works fine now though.

 

[davecov]

An update to my last update.

My GP practice is split over two neighbouring villages with health centres in both and yesterday, for the first time, I received my latest bloods update from the other village health centre. The receptionist who spoke to me seemed really concerned and said that my white blood cell count had dropped again and was extremely low. She said that I should watch myself this weekend and if I get a high temperature, to phone the NHS Helpline. She said that they wanted me to give another set of bloods as soon as possible. I explained that the main cause of my low white blood cell count is my Rheumatoid Arthritis. I have a telephone appointment booked with my GP on Tuesday and that I wasn't going to arrange for a blood test next week until I had spoken to him. Anyway, I have another blood test booked in twelve days time.

My rather ironic situation remains - my immune system is too low for me to go on immuno-suppressors, which are designed to lower my immune system!

Dave

 

[davecov]

Another update to my last update to my previous update...…

My GP phoned me this morning to discuss my medical situation. There was some good news in that the hospital Haematology Department have again confirmed that I am no longer anaemic. However, my GP expressed concern again about my very low white blood cell count. As a result, today he has sent an urgent referral to the hospital for me to attend the hospital Haematology Clinic for more exhaustive blood tests to get to the root of the problem.

Frustratingly, it feels like I am no further forward than I was a year ago when I first started suffering from RA. However, I know just how hard my GP, health centre and hospital staff have worked on my behalf during the last year and I really appreciate their efforts.

The fortnightly blood tests continue....

Dave

 

[Andy the Sheep]

Feeling for you, Dave. Hope there will be positive results soon. Your patience in enduring your health problem is admirable.

 

[davecov]

Another update today.

I gave blood again this morning, and this afternoon, the health centre phoned to say that my white blood cell count had risen again. I am still awaiting a date for an intensive review of my blood at the hospital's Haematology Clinic but until the results of that are known, my GP has reduced the fortnightly blood samples to once a month. As for my Rheumatoid Arthritis symptoms, they had been reduced thanks to the warm weather of last week. However, it is back to cold and wet weather again, and I have had a bad flare-up today, which is not just affecting my modelling again, but walking is very difficult.

Just waiting for the review now.

Dave

 

[boatman]

WE ARE very sorry to hear that Dave an just hope you will feel better soon as it must be horrible not to be able to do things an walk about
ATB to you sir an hope things get better
Chris an jen

 

[Tim Marlow]

Dave, it might be worth asking your GP for a physiotherapy referal while you wait for the rest of it. One of the lesser known issues with RA is muscle wastage, and physiotherapy targeting the relevant muscle groups can mitigate against that. I got a referal in January and it has helped my walking and general flexibility a great deal. I still get flares and stiff legs, but can at least now walk until I’m tired rather than until it is too painful to continue. I can even get down and up off the floor unaided now, something I’ve been unable to do for a couple of years.

 

[Jim R]

Mixed news Dave. Here's hoping that the blood review is encouraging and that we get some warmer weather.

 

[davecov]

Another update but things are no clearer.

I went to the Haematology Clinic at the hospital today to see the specialist and had hoped that I can finally go on the Sulphasalazine immuno-suppressors. It didn't turn out quite as I had hoped.

Apparently, looking back at my blood results since 2012, my white blood cell count has always been low. However, my latest blood results from last Thursday shows a problem not just with my white blood cells but with my platelet level, ie too low. On the 11th September I have to go back to hospital for a Bone Marrow Biopsy which hopefully, will find out what is going on with my blood. Until then, I remain in the dark.

On the brighter side, I have managed to do some modelling lately, so some progress there, at least.

Dave

 

[Jim R]

Waiting for results, waiting for tests, having expectations dashed is all very stressful. I really hope that the root causes of your problems are found soon.
So glad you're back at the bench. Certainly a positive.

 

[davecov]

I went to hospital on Wednesday for the bone marrow biopsy (taken from the back of the pelvis). It didn't take long and the worst part of it was the local anaesthetic. I said at the time that it was the most painful local that I have ever had - and I have had a lot over the years! I am suffering a little discomfort still but I now have to wait three weeks for the results. In the next two weeks I should get the results of my last set of bloods that were taken at the hospital Haematology Clinic as well.

One worrying aspect of my hospital visit is the fact that my medical records are wrong. I was asked what medications I was taking and the consultant queried what I was taking for my RA. I told them only painkillers and she told me that it said on my records that I was taking Sulphasalazine for my RA. I told her that was incorrect. Due to blood disorders, I have never been able to start taking it, although I have received counselling for it. I said that I have repeatedly told medical staff both at the hospital and my health centre that the medical records are wrong and I wanted it correcting, yet nothing happens.

I have a telephone appointment with my GP on 23rd September, so hopefully things will be sorted out then. The following day, I have to give yet more blood. And so it goes on and on...

Until then, I will try and get some modelling done, when physically able. At the moment, I am working on an old-tool Airfix B-17G onto which I have grafted on a Cheyenne tail from a Matchbox kit and changed the staggered waist windows to parallel ones, as the Airfix kit is wrong if portraying "A Bit O' Lace":

Dave

 

[Jim R]

Well Dave at least things are happening so hopefully progress with treatment.
I hope your records get updated. Perhaps another example in our NHS of wonderful, hardworking, caring front line staff but hopeless organisation and management.

 

[Tim Marlow]

Not really Jim, just another example of internal market crap allowing individual trusts and components of trusts to pick critical items of equipment like data systems. The data handling systems are all different between trusts, GPs, etc and none of them seem to talk to each other. Compound that with the systems being picked by senior management, those that have staff to do this stuff for them and consequently couldn’t differentiate between a keyhole and a keyboard and this is what you get……for my RA I have resigned myself to being the information conduit between the various teams dealing with my condition. It’s the only way I can ensure the right info is available where needed.

 

[Jim R]

Not really Jim, just another example of internal market crap allowing individual trusts and components of trusts to pick critical items of equipment like data systems. The data handling systems are all different between trusts, GPs, etc and none of them seem to talk to each other. Compound that with the systems being picked by senior management, those that have staff to do this stuff for them and consequently couldn’t differentiate between a keyhole and a keyboard and this is what you get

I didn't know that Tim although I'm not surprised. My experience of the NHS over the last year or so, and it's been pretty extensive, is that everyone I actually deal with, consultant, GP, nurses etc are first class. The booking of appointments, results from tests, keeping me informed and up to date etc has been rather poor to say the least.

 

[Tim Marlow]

I didn't know that Tim although I'm not surprised. My experience of the NHS over the last year or so, and it's been pretty extensive, is that everyone I actually deal with, consultant, GP, nurses etc are first class. The booking of appointments, results from tests, keeping me informed and up to date etc has been rather poor to say the least.

Pretty much how I see it Jim. I deal with two major hospitals (Yeovil and Dorchester), my GP (Bruton) satellite NHS units (Frome and Wincanton) and a private hospital (Shepton Mallett) for NHS outwork, on a regular basis. All the bits work very well individually, but they don’t join up particularly well. The worst one for delivering results is the private hospital, by the way…..last X rays took about nine weeks to come through. NHS bloods are always back within 24 hours, but work on the premise that if I don’t hear anything there is nothing to worry about. There are few issues when results are processed by the individual establishment requesting them. The problems come when results from one bit are needed by another because the systems involved simply don’t talk to each other and rely on email between units.