Falling Apart: I was diagnosed with Ra or Psa last... - NRAS

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Falling Apart

mole147 profile image
9 Replies

I was diagnosed with Ra or Psa last September after swollen painful hands wrists and ankles and put on Mtx 15mg and Folic acid. I seemed to tolerate the regime pretty well but I have had 3 really bad colds in 4 months and I am still suffering with sinus problems blocked nose and ears. After a hospital appointment 3 weeks ago the Mtx was increased to 20mg and 5mg once per day. I was asked to get a blood test to check progress after 2 weeks. I then went to see Doctor to check a couple of things and as I had deer tick exposure last July a blood test was taken in August to check for Lymes Disease but this test had not been done so the Doctor ordered another one. As I also needed a Ha1c blood test to check my Diabetes I thought I would get all the blood tests done at the same time. I had the blood test last Monday and the nurse took my blood pressure and low and behold it was high 175/101, I was asked to go back later that day to get it checked again, it was down but still raised, I am having a BP monitor fitted today. I know my Diabetes check will also be bad because the Arthritis is stopping me exercising. I feel like I am falling apart at the seams. I am not sure whether the BP could have been raised because of the Mtx or Folic acid as my BP is normally good around 130/85. It all seems to be a vicious circle. I really don't want to have to take more tablets. I was awake before 5am again today. It's just getting me down and I am feeling very depressed.

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9 Replies
JacquiThomas999 profile image
JacquiThomas999

Like you, it's the feeling in the hands and feet that gets me down. Again I seem to be up half the night walking round the house. It seems that nothing ever changes and nothing ever will... I hope that your bloods come back better.

I don't know what it is with the sinuses ..... this is something that's a persistent problem with me too. For a while I thought I had breathing problems, i.e. lung related but I'm now pretty sure it's just the sinuses that are over-sensitive, it's worse at night. I also get recurrent ear infections. I've started trying to monitor myself in terms of what makes it worse. I think the coal fire doesn't help, nor does being indoors all day in a centrally heated environment. Hmm, not too easy to do anything about that in winter. But at home I ventilate rooms as much as possible and make sure I get out in the fresh air at least once a day.

That feeling of falling apart is horrible. And once the conditions start to multiply it's hard to avoid that conclusion. Don't let it overwhelm you though. You mention exercise. Is it possible to do something? Perhaps a weekly swim, a short daily walk, or regular stretching? Exercise truly is good medicine. If you take this one bit at time ... isolating certain things you can do to help improve your overall health without trying to do it all immediately you'll start to feel more in control. It's a long path but you almost certainly will be able to fight back against the helpless feeling.

Pinkbungelowgirl profile image
Pinkbungelowgirl

Please, please check that the Methotrexate should be taken once a week, NOT once a day. Sorry for a brief reply, but this is important that you check this. I hope you are well very soon.x

mole147 profile image
mole147 in reply toPinkbungelowgirl

I am taking the Mtx once per week and the Folic Acid daily, sorry if it wasn't clear.

nomoreheels profile image
nomoreheels

I feel for you, it's a lot to cope with when you're relatively newly diagnosed & have other chronic stuff to boot. I know being unable to exercise affects some people, my h is so pleased he's back at cardio rehab as he's diabetic too & is able to exercise under supervision. His diabetes was one thing he had some control of but his bloods sugars are wonky because of ops & itching to be in control again, it makes him grumpy.

Have your considered phoning the helpline? You might find it helpful feeling as you do. Also, as Postle suggests could help? Gentle exercise/swimming may just lift your spirits.

pm52 profile image
pm52

sorry to hear you are feeling so low, bad time of year and so many bugs flying about, very difficult not to catch anything. Obviously the Mtx lowers your immune system and I know how you feel, I hate this time of year, I try to avoid people with coughs and colds but it is not always possible. Were you advised to stop your Mtx until your cold has gone? My Rheumatology nurse always advises me to stop both Mtc and Enbrel until the cough/cold/chest infection has cleared, otherwise it is very hard to fight it (always takes me 3 times as long as a "normal" person). It is just one thing after another, and then all your other health issues. As one of the previous posts suggested, swimming can help and is gentle are our sore joints. I do hope you start to feel a bit more in control and happier soon, but remember we are all here to listen.

mole147 profile image
mole147

Thanks for the reply. I wasn't advised to stop the Mtx but after doing some research it seems to be the prudent thing to do, so I have not taken it this week. I could not have the BP monitor fitted but they gave me a machine to take home for self testing when the nurse showed me how to do it my BP was 172/101, very high. I took my first reading this morning and it was 149/92, I am now starting to wonder whether it is the Mtx that has caused the high blood pressure, it will be interesting to find out over the next few days. I asked the nurse to check what it was the last time I had it checked which was about 6 months ago and it was 130/82 which I think is pretty normal for my age.

pm52 profile image
pm52

It is like being between a stone and a sharp rock, if you stop the Mtx the infection clears up quicker but then you are in more pain, but I hope you get better really soon and can restart the Mtx. I don't know if Mtx can affect your blood pressure, perhaps best to speak to your rheumatology nurse if you have one available. Usually there is a helpline no. you can call and leave a message and then they call you back. Hope you get it all sorted quickly.

mole147 profile image
mole147 in reply topm52

I agree, there are so many conflicting opinions but I suppose if the Mtx suppresses your immune system it seems logical to stop taking it until the infection goes and then restart. I am pretty sure the rise in BP is due to lack of exercise because of the RA but did a bit of a walk yesterday. Anyway will keep checking BP but it is still high.

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