Blood tests worse than illness.

seanie

I have had Reiter's Syndrome/ Psoriatic Arthropathy for thirty years.
Currently I'm on Methotrexate at 12.5 mg/ week. I'm desperate to stop taking this medicine now. Because of blood testing.
I'm required to have blood tests- though until last week I'd been allowed to keep it down to 8 weekly- which is the most I can tolerate.
A blood test is worse than all the pain in my hands and back.
It means a 5 AM start, so that I'm able to leave the house at 7 AM, to arrive at the testing centre for 7.30 AM. There are usually already people there when I arrive. Then we have to wait outside in the cold for an hour until the centre opens. Then wait a further half hour in a horrible room for the first test at 9 AM. During all this time, there's nothing to do but anticipate the steel being shoved in my arm.
Fights have broken out in this queue, and when testing starts, there are upwards of 100 people waiting. Many with no- where to sit. There are only two operatives taking blood.
Last week a new rheum. told me I have to go on Etanercept, (while he was deliberately hurting me, like they do.) To do this- so he can tick his flaming box- I'd have to increase the MTX by 2.5mg a month to 20mg. And have a test every 4 weeks.
Then, on Etanercept, I'd have to queue every 2 weeks for the injection. (expletive deleted)
At first I said "yes." Then the anger kicked in, quickly follwed by intense depression. Now all I want is to get discharged from the Rheumatologist and stop taking MTX. Not because of the medicine, but because of the blood tests.
It makes me intensely upset that doctors have no conception of what they ask of patients!
Of the dozens of times I've been though this intensely unpleasant testing procedure, not one has had the slightest positive benefit for me. Not one blood test has told the doctors anything they didn't know already. The whole exercise is pointless, unless you're idiotic enough to put your liver at risk with booze, which I'm certainly not.
And if I need Etanercept, then that proves the MTX is ineffective. But Mr (expletive deleted) Doctor completely neglected to tell me that- as he also neglected to tell me I'd have to stop taking the old faithful Diclofenac too.
So, (apologies for angry long- windedness,) my question is- can I just stop taking the MTX and blood tests? Or is there some routine I should go through, like reducing it over a number of weeks?
As fort getting discharged from the Rheum., seems to me that it's just a case of not showing up. I may even phone to cancel the appt. Honestly, I wish, in the depth of this ocean of negative feelings that the (expletive deleted) doctor threw me in, I'd never attended last week.
GRRR!

helpline_team

Hi Seanie

Well you certainly are being put through the mill. I am so sorry to hear about the traumatic experiences you have to go through with you rheumy and the blood tests. Have you enquird at you GP whether you can have your bloods taken at the surgery? Hopefully this may be possible if there is a practice nurse or perhaps even the doctor will do it if you explain the traumas you have to go through.

Of course it is entirely your decision about whether or not you take your medication however it seems that whilst you are in the depth of negative feelings as you put it, it may not be the right time to make the decision regarding you treatment. Coming off the methotrexate is also going to have its consequences. It seems as though your rheumatologist is doing their best in suggesting a more effective treatment. As you said it is more the issue about the blood testing situation that has riled you so perhaps it is worth enquiring at the surgery as this may help take away some of the stress around this situation.

If it would help to talk it through with one of us then please feel free to give us a call. We are here till 4.00pm 23rd Dec.

Merry Christmas and a Happy New Year

best wishes

Simona

seanie

Thanks very much for the reply, Simona.
I went to the GP on Friday to ask about the blood tests, as you suggest. Unfortunately the doctor I saw was unable to answer this question! (Nor another about the loss of Diclofenac.) If I was going to follow the Rheum's directions, I'd have had to have asked for an increased MTX dose then and there- as I was due my next dose. But in the absence of proper advice, I had no choice but to decline.
I feel I have coped extremely well with this chronic illness over many years. I live alone, and I still manage to exercise, rest and eat properly, and I squeeze as much enjoyment as I can out of life. During the past couple of years, I've got myself working and earning again after more than a decade off- even if only occasional busking on the Tube. (I had to pass an audition and get a license, btw.)
Then the doctors come along and through a combination of treating me as symptoms, not a person, and total incompetence, they manage to sabotage me completely. It's happened before. I loathe doctors at times like these and it takes months or even years to regain the slightest trust in them.
But anyway, thanks again for the reply. I may well call the helpline later. Have a very happy Christmas!

jaspercat

Hi Seanie, I have my blood tests done every month by the district nurse at my house, they offered the service to me as they see my husband twice a week, I find it much better and they are so kind and gentle with me, why don't you ask? every gp surgery has a district nurse team love Jaspercatxx