Self-absorbed health update post – MCTD and RA and BP

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I’ve got lots to write about. Helpful stuff.  Informational stuff. But I’m just too sick.  There is a lot going on and this is one of those posts that’s largely for my own benefit, and my own records. To remember what happened, when, and prompt me later.

These kinds of posts allowed me to prove to my rheumatologist that I had, infact, qualified for biologicals a few years ago, so they are handy. To me at least.

So where are things at?

I’m at 10mg of prednisone and tapering by 1 mg per month.  I have to get off prednisone because its contributing to high blood pressure which has already caused some major neurological and cardiac problems. Crunch time.

My rheumatologist, cardiologist and neurologist all agree that prednisone is only masking whatever is going on.  My GP and another GP I second opinioned both think it’s time to start from scratch.

I agree.

RA is not my biggest problem right now.  I’m managing it.  For some, my RA pain would be mild.  For others it would be excruciating. For ME, it’s controlled with this level of prednisone, oxycodone, exercise and rest.  More rest than I would like, but the megaflares only come twice a week or so.  The daily pain is doable.  I have 2-3 functional hours on a good day. For me, that’s good.

My spinal pain is the worst pain I experience.  I saw my GP two days ago to get a second opinion from a neurosurgeon.  I believe the spinal orthopedic surgeon just didn’t want my case.  Complicated.  High risk of failure. Having said that, I far prefer a surgeon who refuses to do surgery if they don’t think the odds are favourable.  For me, 50/50 is worth it.  I don’t think I am very good at expressing how much pain I am feeling.  I also don’t know how to say it so people understand, and I don’t know how to show it.  I had a SPECT-CT yesterday. If that shows nerve damage, he will reconsider surgery.

At any rate, I am getting a second opinion.  That appointment is scheduled for the end of June.

I’m also going to see an upper limb orthopedic surgeon, the same surgeon who did my shoulder surgery, to see if she can do anything to improve my hand function.  I mostly only have the use of my thumb and first two fingers.  The little finger and ring finger are mostly just ‘there’ and the neuropathy (painful pins and needles) is constant and has been for years.

The spinal ortho thinks I have cubital tunnel syndrome, where the nerves are impinged in my elbows, causing the pain and numbness in my hands.  Phyisotherapy can help, but my case is advanced with significant muscle wastage, so surgery is the only option. Although he believes it’s too late for surgery in my case. There is a window of opportunity before the nerve damage (and pain and numbness and loss of function) is permanent.

Hands, elbows and shoulders aren’t his specialty though. So I’m going to the lady who’s specialty it IS and see what she has to say.  That appointment is at the end of May.

My GP feels that there isn’t nerve impingement as such. He feels that all my joints are inflamed, all the time and nerves are compressed because of the constant inflammation.  He doesn’t believe there is a surgical option, but he is more than happy to refer me to the specialist orthopod for an opinion.

My GP is back in my corner.  He knows the pattern.  I fall to pieces.  I slowly get back up.  And then I start chasing down problems to try and get some pain relief. Even a little relief.  To improve my quality of life.

For a while there he wasn’t in my corner. I don’t know where he was.  But I need him.  It’s a shame that I have to be feeling suicidal and completely broken down to get him back.  But back he is.  I think he’s over worked and over loaded, and not that healthy himself.  Yes, that’s right I’m doctoring my doctor.  It’s a hard job being a general practitioner.  From the tedium of dealing with colds and viruses to chronic illnesses that there’s not much to be done for, to people who are dying.  They deal with a lot.  All ends of the spectrum.  It must get too hard sometimes.

But he always recognizes when I am at the end of my rope. It usually involves me saying something like ‘I am at the end of my rope’.  And now he’s back on deck.  He’s aware that I became overwhelmed with suicidal feelings a few weeks ago, and he’s aware that I’m quite the fragile beastie still. He’s aware that I’m flying solo and I have no one else to call.  So he’s going to take the call.  And if I need to chase down doctors and look for solutions, then he will help me do that.  He is also prepared to talk about suicidal feelings and that’s something no one else is game to do.  Most people shy away from those conversations and pretend they aren’t happening, but that’s another post.

I originally agreed to the prednisone taper because I was scared of staying on it. Then I was scared of going off it.  I’ve been running a race with prednisone.  To just stay mobile until my kids are grown up.  I’m not going to win that race.  So now I have to get down to 5mg, because that is the accepted ‘safe’ dose.  That will take me another five months to achieve.

And there is no breaking this time.  No giving in and doing a burst so that I can get through something I need to do.  My life is largely spent on the couch right now.  I go to gym for half an hour a few days a week.  As much as possible.  The rest of the time I’m lying down. My house is a sty.  I’m not eating, I have no appetite.  And a few weeks ago I felt like if I just faded away and died that would be OK.

I don’t feel that way anymore.  But I’m not managing the day to day, and I have to stop and go back to basics.  This weekend I have to cook. Stock my freezer.  I need to feed myself and my family.  And teach them the dishes as I cook them.

I know I have to do the prednisone taper. I know where its leading. I’m doing better than expected, however.  There’s a little something inside me saying maybe this time I’ll be OK.

I have a constant headache, and its driving me nuts.  My blood pressure was improved when I was at my GPs office (135/80 – very good).  But at home, today, with a pounding headache, its back up to 148/89.  Not so good.

My cardiologist told me to watch out for the headache as the prednisone taper continues.  He believes I have cerebral vasculitis.  My neurologist believed that too, but I had a clear MRA.  No inflamed blood vessels in my brain.  So he ruled it out. I was on prednisone at the time, however.  My cardiologist is not convinced.

Neither is my rheumatologist. I’m finally seeing her this afternoon, after chasing her for two weeks.

We’ll discuss Xeljanz.  Although she told me about 8 weeks ago that she would apply for it, she didn’t.  I have no idea why she didn’t.   Turns out I think that’s the right move. Xeljanz will almost certainly bump up my blood pressure.  And that’s very dangerous for me.  My blood pressure has to come down.  And I am not prepared to take the risk. I am also not convinced Xeljanz will help, and neither is my rheumatologist.

My proper diagnosis is Mixed Connective Tissue Disease, but RA was always considered the main disease.  And that’s where treatment has been focused.  I don’t think RA is my main problem anymore.  I think the neurological problems that I have tend to flare and remit.  If they were stroke related, they would be constant (in my uneducated opinion).  Therefore I think they are inflammation related, and my cardiologist is correct about the cerebral vasculitis.  He has written to my rheumatologist.  I’m sure we’ll discuss his opinion today.

But for me, I think my MCTD is more lupus-like with a side of RA, than the reverse.  I have too many systemic issues.  And I think throwing more biologicals on top of everything else is a bad idea now.

That’s what my rheumatologist was trying to tell me at my last appointment. I am seeing what she is getting at now.  I wasn’t ready to listen 8 weeks ago, because it’s just very scary to be told by your most important specialist that they don’t think they can do anything more to help you.  So I pretty much begged her to apply for Xeljanz.  She agreed, but must have thought better of it.

In the meantime, the headache is driving me crazy. It’s bad today, and I have ‘holes’ in my vision.  Blind spots.  And blurred vision in my right eye.  My eyes are fine, so it has to be optic nerve or brain related.  It’s not typical of RA to have a constant icepick-to-the-temple headache and blurred vision in the same eye.  But perhaps as the prednisone decreases, and my symptoms react accordingly, a different picture will emerge.

The other neuro symptoms (balance, memory issues) have improved.  The peripheral neuropathy is constant and more than unpleasant.

I am exercising, but gently.  My treadmill test means that I can’t get my heart rate up very high.  I have an ‘exaggerated response to exercise’ according to my cardiologist.  For some reason that makes me laugh.  But my cardiologist recommends exercise to help control blood pressure, and its important to keep my joints moving.  So, low impact, gentle exercise.  As soon as the chest pain starts, I stop.  As soon as the breathlessness starts, I stop.  Both of those have been better lately.

I don’t think my pain levels are that bad. I just think I’m not coping with the pain as well as I used to.  I think I’m emotionally spent and am not fighting the pain as well as I used to.

So I’m essentially going to ask my rheumatologist to hold other RA treatment until I get to 5mg of prednisone, but not cut me loose.  I think she will agree.  I’m not looking forward to the experience.  I’m not at all sure how I will manage.  But I think things have to get worse before they get better.  And unless I get my blood pressure down, life is not going to look good anyway.

So that’s where I’m at.

I just want to be clear. I am in this position because of decisions I made. Informed decisions. My doctors have been telling me for years that prednisone would do irreversible damage. And now it has.  I have very good doctors and they did what I told them to do. I took the chance.  I made the best decision I could, with the options I had available.

The truth is, I never really had any good options.  None of the drugs work for me.  And I had no support. So I couldn’t afford to be that sick, with two young children to care for. I had to get up and function. I could have tried to hold onto a man who was no longer in love with me and was in love with someone else.  And wasn’t offering his support anyway.  Living that reality day to day would have destroyed me as surely as the prednisone.  Probably quicker.  So. Prednisone it was.  I accept that, and I don’t blame anyone. Not even myself.  It’s just the way things had to go.

4 COMMENTS

  1. From someone who is currently in that position, of no available treatment options left and no steroids, I need to tell you that you will be ok sweetie:-)
    Not great, but ok – and ok is alright to get by with for now.
    I’ve also got some MCTD mixed in there, plus RA, plus Sjogrens,plus Raynauds, plus lifelong kidney disease.
    Going back to basics, back to the start before steroids, seems to make sense for me just now, as none of us seem to know what symptom is caused by which disease, or is a medication side effect, or is caused by nerve damage, or joint erosion etc etc etc.

    Blogging is good for you and provides a handy ‘timeline’ of your diseases.
    Hugs xx

  2. I was just recently diagnosed with RA, 11/15, and I’ve always been one that everyone said had a very high tolerance to pain. Living with the pain every day seemed to kill that theory. My last appointment with my rheumatologist with my newest blood work shows my levels are good, but why am I still hurting so bad? They’ve changed me from Simponi to Humira. My first shipment will be here tomorrow. The side effects are rather scary, but I’m willing to try anything to relieve some of the pain. I’m still working full time when I can. Some data the pain is just too much. Most of the people I work with think I’m just tired of working…if they only knew my daily struggles. My husband is very supportive, but I don’t think he realizes the extent of how I feel daily. I’m to the point when someone asks how I’m feeling, I respond with I’m fine. Being new at this, I’m finding it hard to stay optimistic.

    • It IS hard Dana, possibly one of the hardest things of all to do – to keep looking forwards, and staying positive. Having said that, you are allowed your down days, you’re only human. And this is still all very new to you, the diagnosis. The pain has probably been around for much longer. Having a high pain tolerance often doesn’t do you any favours. It’s impossible for people to understand that you’re doing what you do, living your life WITH the pain, because you have no choice. It’s like they want you to be rolling around on teh floor screaming before they’ll believe you. Of course if you DID do that,they’d probably tell you to stop making such a fuss!…lol. I’m glad your husband is doing his best to be supportive. It’s still all new to him too, and its probably very hard for him to see you in such pain. I really hope the Humira works for you! You’ll have taken your first dose by now – sorry for the late reply. Notifications not working on the blog for some reason. Humira can work fairly quickly sometimes…I very much wish that for you. Hang in there Dana. Let me know how you’re going x

  3. I am so sorry about your recent experiences. I am hoping you find some wonderful solutions. I am also hoping Xeljanz is approved and puts some of this behind you, at least as much as any of us cna expect.

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