discussion A New Arthritis Hell

[Tim Marlow]

No problem Dave. I remember all the pre checks…..mostly bloods and MRI scans I remember. Seems you have to be ill enough to go on them, then checked to make sure you are well enough to go on them LOL. Didn’t you get a steroid jab to tide you over though? I did, and the symptoms disappeared for about three months while the meds started working.

 

[Jim R]

Fingers crossed that the new meds work. By the new year you'll be back at the bench I'm sure :thumb2:

 

[davecov]

No problem Dave. I remember all the pre checks…..mostly bloods and MRI scans I remember. Seems you have to be ill enough to go on them, then checked to make sure you are well enough to go on them LOL. Didn’t you get a steroid jab to tide you over though? I did, and the symptoms disappeared for about three months while the meds started working.

My consultant decided against giving me steroids as I have just been diagnosed with Type 2 Diabetes too and as I had that under control, he didn't want to disturb my progress with it.

Dave

 

[Andy T]

Didn’t you get a steroid jab to tide you over though? I did, and the symptoms disappeared for about three months while the meds started working.

Zoë had that. She was like a different woman, literally overnight. Amazing what the right medicine can do.

Yes the effects faded but she was overwhelmed at the relief it brought after months of suffering, and it gave her hope for what the longer term treatments could achieve.

 

[wotan]

Dave

Sorry to hear about your issues. The lads on here have more direct experience than me although I do know that growing old is not for the weak hearted. Hang in there and I hope the meds cocktail gets to work asap.

All the best from over the pond.

John

PS Hair loss is no biggy, my avatar looks a lot like me i'm sure you will look great wearing hats, I have for many years.

 

[Tim Marlow]

Zoë had that. She was like a different woman, literally overnight. Amazing what the right medicine can do.

Yes the effects faded but she was overwhelmed at the relief it brought after months of suffering, and it gave her hope for what the longer term treatments could achieve.

That’s exactly how I felt. The steroid bounce is quite impressive really, quite euphoric . You feel like a world beater for a few days. They can be given again if Zoe experiences flare ups in her symptoms, by the way, up to five times a year (I think). Unfortunately they get less effective the more you have, but there is a tablet form that is also effective and can be used instead. Here’s hoping she doesn’t need them though :thumb2:

 

[Andy T]

Thanks Tim, I/we weren't aware of that.

Fingers crossed (pun intended) the meds seem to be doing the trick. She had to have 2 weeks off the meth' recently due to covid & flu jabs, and was starting to flare up a little. Back on the tablets for 2 weeks now and it has calmed right back down.

Sorry for the hijack Dave but hopefully it's all useful information.

 

[Tim Marlow]

Glad the meds are working Andy. Must admit I never stopped taking the meth when having the jabs, I never thought about it and just carried on as normal.

 

[Guest]

Just hope you get the relief Dave, sounds most painful, I get the odd twinge in my left hand and that's bad enough.

 

[davecov]

A little update on my Diabetes and Rheumatoid Arthritis.

On the Diabetes side, I had my three month Diabetes blood test this week and my HbA1c is now 38 (5.6%) when it was 86 (10%) three months ago. Blood pressure is now 128/82 (was 136/90). Cholesterol is now 3.2 mmol/L (was 3.4 mmol). I have also lost 1 stone, 5 lbs over the same period. If my understanding is correct then my Hba1c is in the normal range and not even pre-diabetic. I will be seeing my GP on 19th December to discuss the results of the blood test.

On the Rheumatoid Arthritis side, I had been improving quite a bit but with the occasional flare up which seems to happen more when the temperature gets lower. Having had the Pneumococcal vaccination, I finally began taking the Methotrexate immuno-suppressors just over two weeks ago, starting with 10mg for the first two weeks. I saw my GP who took the first blood test and gave me two lots 12.5mg to take over the next fortnight. However, having received the results of my Methotrexate blood test, my health centre gave me a message from my GP not to increase my dosage to 12.5mg but to stay on 10mg. My GP is away at the moment but no doubt he will tell me what is behind the decision not to increase when I see him on the 19th.

Dave

 

[Tim Marlow]

Sounds positive Dave. Hope they get the meth dose sorted out quickly for you. However, if they can’t, don’t worry as there are many other treatments they can use.
I find flares happen if I get too cold or if the atmospheric pressure changes rapidly due to storm fronts or suchlike. Stress also exacerbates the condition. Funnily enough other infections (I’ve had covid twice and a few colds since I was diagnosed) tend to make it better as your immune system goes off to fight something else and leaves your joints alone for a while. I’ve also found swimming helps, especially with flares. Arthritis gloves are also useful if your fingers start stiffening up. Wear them overnight and your hands will be much better in the morning.
I’m on 20mg of meth with no issues, and some treatments (cancer I think) get it up to 80mg. I was started on 15mg (six tablets) then it was upped to 20mg (8 tablets) after 18 months as the condition worsened. Now on 20mg subcutaneous injection, which is more effective with less side effects than the tablets. Easier to handle as well. Just had the tests done for my next Retuximab infusion, so should start that before Xmas. Apparently the second dose is even more effective than the first in most cases, so I’m looking forward to it :thumb2:
It could well be that your renal function is a little up in the air after sorting out the diabetes and they want it to settle first before upping your dose. Are you on weekly bloods at the moment? I was until they were happy the meds weren’t doing any damage, then they were moved out to monthly.

 

[davecov]

I'm on fortnightly blood tests right now, Tim.

Dave

 

[Jim R]

Very glad the diabetes is under control. Down to your own efforts so well done. I hope the improvement in your RA continues and the medicine dosage is sorted.

 

[Tim Marlow]

I'm on fortnightly blood tests right now, Tim.

Dave

As soon as it settles they’ll drop it to monthly Dave.

 

[davecov]

Following my last optimistic update, here is another update that is not so good. I have been taken off Methotrexate due to my white blood cell count being much, much lower than it should be given the dose (10mg) that I have been taking. In September, the count was normal but it is now way down and my doctor is worried that it may be due to other reasons and not just Methotrexate. My doctor is contacting my Rheumatology Consultant today to ask for some advice and he said that it could be that I won't go back onto Methotrexate. We will see.

Because of the low white blood cell count, I had to give more blood on Tuesday and have a urine test to see if there was any blood. Also had a prostate examination. Thankfully, that and the urine tests were clear. I was due to be away from home until the 9th January but I now have to be home for the 4th when I have to give more blood. I also have to go to hospital for more comprehensive tests some time in the New Year.

Just a case of wait and see now.

Dave

 

[Tim Marlow]

That’s a blow Dave. Plenty of other things they can put you on, but they need to get to the bottom of this first. Seem to remember having a large battery of bloods done, chest X-rays and a CT scan with contrast before I could even start on it. These things always seem to happen at Xmas….hope you have a good one despite this set back.

 

[boatman]

HI Dave jen an i are very sorry to hear you are still not well for christmas an we hope you will get better results in the new yr
ATB
from jen an i

 

[davecov]

Thanks Tim and Chris.

Ironically, Chris, I haven't felt so good for ages - probably due to stopping the Methotrexate that always made me feel queasy for 48 hours or so.

Dave

 

[Jim R]

Sorry to hear that Dave. Tests are worrying but necessary. Best to get to the bottom of the problem and get it sorted. Just very stressful not knowing.

 

[Lee Drennen]

Sorry to hear this Dave. Seems my is hurting more this year I have the same thing you have but I’ve noticed my hands are hurting more and more just to think of putting a model together makes me cringe anymore. Hope you get some relief I’ve had Arthritis since I was 11 years old now I’m 55.