My Arthritis Hell Continues

[stevehnz]

It sounds like you're having a real time of it lately Dave, I hope they get to the nub of it soon. More positively, your DH4 is a cracker & looks really good with the Dark Earth on it, a very convincing PC10.

Steve.

[davecov]

Thanks Steve 👍

 

Dave

[davecov]

It has been two and a half weeks since I had a colonography and I have been waiting for the results to arrive. I was in my village health centre this morning giving yet another blood sample and collecting more tablets, so I asked if my results were in. They were not, which was disappointing.

 

However, tonight my GP phoned to say that he had found out my results by logging into the hospital system. According to the results, there is nothing of concern down below, with "no lumps, bumps or tumours". To say that is a relief is  bit of an understatement and although I had always hoped that I would get the all-clear from the colonography, there was a dark cloud hanging over everything I did. Having said that, my GP and I are still waiting for the official news from the hospital consultant.

 

I am still awaiting the blood results from the hospital's haematologist as well which hopefully will reveal the cause of the anaemia that I am suffering. Hopefully, once the anaemia is dealt with, I can finally start taking the Sulphazalazine immuno-suppressors for my Rheumatoid Arthritis.

 

Some good news - for months I had been on Naproxen before my upper endoscopy eight weeks ago, but that caused some irritation on my stomach lining so my GP replaced it with Etoricoxib. He says that I no longer need to take that daily and we are going to see if I can do without it completely in due course.

 

Finally, I have a three-monthly Type 2 Diabetes review this Thursday and as I have been in remission for almost six months now, it is no longer a worry for me. I will have another review in October.

 

All in all, good news but I still have the big problem of dealing with lots of builds that have stalled over the past few weeks! Mind you, I know that I am not alone in having that particular problem!

 

Dave

[Pete in Lincs]

11 minutes ago, davecov said:

"no lumps, bumps or tumours"

Good news indeed. And yes, a huge relief. Been there, done that. 

[Bullbasket]

👍

 

John.

[davecov]

Wednesday morning I got the results of Tuesday's blood sample and according to my GP, my blood is "stable but improving". So, perhaps one day I won't be anaemic! As for my diabetes review yesterday, I got a call from the health centre this morning and my HbA1c remains at 38 (5.6%) and it has been at that level for the past five months. At least that has been stable too. It had been planned that I would come off Metformin altogether, shortly, but I have been asked to remain on it until the next review in December.

I had been meaning to get back to my modelling bench by now but the Rheumatoid Arthritis is too bad for such fiddly work. I might have to content myself with mowing the grass jungle this afternoon instead - providing conditions are not too damp. It will be the first cut of the year so there is a lot to do and I will probably have to mow it over three sessions.

Dave

[Pete in Lincs]

Pretty good results then, Dave. Well done. The Arthritis and lack of bench time must be driving you up the wall though

At least the mowing is exercise so that's good for you.

[davecov]

Another update on this saga but there may be light at the end of the tunnel. Last week I got a letter from the hospital giving me the official all-clear after the Colonography and there will be no follow-up. Good news there.  Today, my GP phoned me to say that the haematologist had finally got back to him after weeks of waiting. The haematologist confirmed that I am no longer anaemic! It looks like the change of diet and strong iron tablets have finally worked.

 

I asked my GP about the Sulphasalazine immuno-suppressors which I need to help with my Rheumatoid Arthritis but he said to wait until the results of my next fasting blood test which will be next week. Providing they are okay, he will approach the Rheumatology department at the hospital and discuss when I can start on the Sulphasalazine.

 

At last, I may finally be restarting on immuno-suppressors which was stopped last year due to an adverse affect. Sulphasalazine is a different one to then, so hopefully things will work out for the better. It cannot come too soon because I have been really struggling with my joints for weeks, especially my hands which has meant I have been unable to do any modelling for almost two months now.

 

Dave

[Stratto]

I just stumbled across your post Davecov (newbie) I can relate to some of your situation, I wish you well. I have been in a lot of pain for years gave up work 18 months ago 63 too young to officially retire. I finally got my GP to get me a referral to Rheumatology on the 4th July. I am up north in Aberdeenshire. Looks like some auto immune thing spine, pelvis pain. Sacroilitis psoriatic arthritis or even Spondylitis. Neck curvature. So maybe I will get some help at last. I wish you luck and thanks for keeping us updated. It’s a bit rubbish when you can’t get much done being in pain. I get that a lot. 

[davecov]

Sorry to hear of your own issues, @Stratto, hopefully, you can get the help you need.

 

Dave

[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

[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

[Pete in Lincs]

Catch 22 strikes again. I hope they can sort something out for you soon.

[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

[Stratto]

I hope they find some answers soon, it’s very frustrating when it’s one test after another. I am waiting for another MRI of my pelvis the first one was not arranged properly and as the 4th July was my first Rheumi appointment they wanted to be thorough. They are looking for evidence of arthritis to diagnose the next step. It’s looking like reactive arthritis which has infected my sacroiliac joints related to stiffness first thing. If diagnosed it could be AS ankolysing spondylitis which is why they took blood and tested me for the HLA-B27 gene which is common in people with AS. I have age related neck wear and I am just recovering from severe neck pain. The good news is my neck is getting better after using a Cervical Memory Foam pillow. The associated pain will not go away but once diagnosed it will be about managing the pain. I want so much to crack on with modelling but it’s very difficult with the severe fatigue. I will just keep plodding on. Keep the updates coming it’s good to hear some news as it can sometimes help to share. 

[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

[Pete in Lincs]

So good news and bad. I hope the review comes soon. Best wishes Mate.

[Stratto]

Yeah good to hear some positives. Just a quick update not wanting to hijack your personal thread. I finally got an appointment with the spinal team for my neck pain and pain and numbness in my hands and arms. I also got another MRI for my pelvis SI this time so hopefully Rhemi and Orthapedics can come up with a plan but I am at the early stages. Good luck Dave hope you here from Haematology Clinic soon.

[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

[flyboy2610]

Lots of prayers headed your way, Dave!

[Pete in Lincs]

22 hours ago, davecov said:

have managed to do some modelling lately, so some progress there, at least.

And so there's a bit of good news at least. Your medical woes however make sad reading. All the best to you. I hope the marrow gets sorted.

[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! 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...

 

Dave

[Pete in Lincs]

It seems that the computer is never wrong. It's always the patient, as they know nothing. I hope the test results come out positive. 

All the best.

[Stratto]

Hi Dave and so it carries on with more tests hopefully they will find something and be able to give you some support or treatment my brother suffers with RA so I can relate somewhat to your situation.

 

i like to get updates to my medical records as errors do occur and you are right to query them.

 

all the best. 

[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