The truth about living with Rheumatoid Arthritis


Rheumatologist follow up 27 Jan 2017 and the plan for the weeks ahead

On Tuesday the 17th I saw my rheumatologist. The appointment was long and it was the usual.  I wanted a steroid infusion to get on top of the inflammation and pain. She refused, because she believes that my inflammatory arthritis is not severe enough for a steroid infusion.  We debated, but ultimately she just refused.

Her idea was to switch me to my final biological.  Fail Xeljanz, on the basis that my liver enzymes are rising again, and I had been in the ER the previous Friday with severe upper GI pain.

I asked her if this would definitely be my last biological.  In Australia you only get five biologicals in your lifetime. After that, you’re out of treatment options. There are ways around that, in some special cases, but she confirmed that she would not be going to pull any strings for me.  She threw around the fibromyalgia word and ‘pain sensitisation syndrome’ and I just smiled and nodded.

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Medical records and dickhead doctors and standing up for my rights

I am so angry.  With my neurologist.  The one who looked at my Lumbar Puncture and told me there was nothing treatable. The one who told to me try exercise and a psychologist.  And had nothing to say when I told him I had tried all of that and more.  I was too tired and depressed to fight that day. If a doctor doesn’t’ want to treat you, its not going to be a successful relationship, anyway.  Once again I was ‘middle aged female depression’ zoned.

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Rheumatologist and go to your neuro, go directly to your neuro, do not pass ‘go’, do not get Xeljanz

I saw my rheumatologist today.  I haven’t seen her for a while.  She has been in the holding pattern, waiting to see what my allergy results would show.

We cut to the chase quickly and agreed that neither one of us knows what to do next.

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Neurology update number 2? 3? I forget

My neurologist is getting more chatty. I’m becoming more interesting to him.  I’m a collection of interesting neurological signs that he is yet to put into a diagnostic box.

Today we ran through my symptoms – pins and needles in hands and feet, ranging from mild to painful. Sometimes just a tingling feeling, sometimes burning pain.  I still have some difficulty swallowing, but I am much improved since the oesophageal dilation.  Now I can swallow food fine, I mostly have trouble with liquids feeling like I am swallowing a golf ball. Weird.  He agrees.  I have memory problems, and have episodes of confusion.  Then there’s the vision problems, but only in my right eye.  Today my facial tic was in residence also, and my eye was droopy and I was unable to fully open it.  A very clear and obvious sign.  I have found that even when doctors work within specialties where disease is often invisible, appointments still run better when you have noticeable, visible signs.

Not symptoms. Signs.

My droopy eye and blurred vision interested him.  But he said it is most likely blepharospasm.  It could be neurological, or it could be related to my dry eyes (Sjogren’s).  It is easily treatable with botox injections.   Sounds good!  Stupidly I forgot to make an appointment as I left.  (Told you I had memory problems!)  He suggested I come back in a few weeks and have the botox injections.  My eyesight should then improve and I won’t have those days where I can’t leave the house because I can’t see well enough to drive safely.

For the pins and needles and numbness he did a nerve conduction study.  He attached electrodes to various points on my hands and feet and sent an electric charge to test the nerve response. He also inserted needles into various places.  Parts of it were uncomfortable, but not painful.

He diagnosed small fibre peripheral neuropathy.  He didn’t talk about cause or treatment.  I do know that Arava is associated with peripheral neuropathy and I mentioned this to him. He said ‘possibly’ but no more than that.  I said he’s getting chattier, but he’s still a man of few words.

I hope this doesn’t mean I have to stop Arava. It’s currently the only DMARD I can take.  (Aside from plaquenil, which is a very mild DMARD and doesn’t do much on its own).

I asked him about biologicals and if there were any reason that I shouldn’t go back on them.  He didn’t know much about Rheumatoid Arthritis medications, as you’d expect.  He didn’t see a problem, however.

My follow up MRI showed the same issues as the previous one.  He leans towards small strokes, and so stay on the blood thinners (aspirin) and keep an eye on my blood pressure.  The MRA was normal, which is a huge relief.  Cerebral vasculitis is bad, so I’m very glad that he wasn’t right about that.  I would do cartwheels, but you know, RA and all.  He was happily surprised that the MRA was clear.

MS can’t be ruled out, but he doesn’t believe that I have MS.  This pleases me very much.  I’ll have follow up MRIs, but not for 12 months, unless things worse.  It’s not off the table, but it’s not something that I’m going to waste time worrying about.

All in all, pretty good news.  He’s just tackling each set of signs and symptoms, one at a time, and treating the symptoms.  Treating the cause would be better, but the cause is unknown.  He is concerned with improving my quality of life. That is more than good enough for me right now.

I do reflect on the fact that a ‘normal’ person would probably find all of this stuff scary and terrible and be panicking about the future and the possibly awful things that could develop from here.

Almost ten years of severe RA has taught me that there’s nothing to be gained by worrying about things that haven’t happened yet. May never happen, in fact.  I always figure out what the worst case scenario is, know what I need to watch for, and then put it out of my mind.

And in truth my RA symptoms, in particular the severe pain of RA, is worse than these neurological ticks.  I realised after I left I forgot to tell him about my urinary problems, and that I have woken up choking on my saliva a few times.  Those things could be neurological as well.  But no big. I’ll be seeing him again in a few weeks.  I’ll talk to him then.

In the meantime, it’s almost time to head to rheumy.  And talk about how to knock my RA down.  I think it’s time to move on to the next biological.  My fourth out of the five that I am allowed under medicare.  That is, the cost will be subsidised by the government.   I’m running out of options.  But there is no use sticking with treatments  that don’t work, or don’t work well enough.


Rheumatoid Arthritis and stomach problems?

For the last several weeks I’ve had major trouble eating.  Yep, eating. Sounds simple, right?  Feel hungry. Choose a food. Put it in your mouth. Chew. Swallow. Feel good!

That’s the way it should work, but it hasn’t worked that way for me for quite some time.  Months. Even years.  Just not as severely as of late.

I had my gall bladder removed in the hope that it was the cause of most of my gastric problems. My surgeon doubted it.  He said my stomach pain was multi-factorial and the gallbladder removal would help with some of the pain, but not likely all.

He was right.

So what’s been happening?

Well the worst thing is the swallowing problems (dysphagia).  This has been happening for years, and it’s part of the reason why my rheumatologist ordered the brain MRI to check for Multiple Sclerosis (MS).  Difficulty swallowing and choking are two symptoms of MS.

For the last few weeks I haven’t been able to swallow solid food.  When I try to eat a harder, solid food, like meat, I try to swallow and my throat spasms shut. The food gets stuck in my throat and I get an almighty pain in my chest. I’m not choking, I can breathe fine. The food is literally stuck though, and it’s very, very painful. It won’t go down, and it can go on for hours.

WARNING: TMI. Skip this next paragraph if you’re easily grossed out.

Because the pain can go on for hours, and because the pain is BAD, as soon as it happens I now stick my fingers down my throat and throw up the offending food.  Who’d have thought that my years of bulimia in high school would give me life skills for managing my chronic diseases?

So far I can usually dislodge the food.  As I said, I’m not choking, it’s just very painful.  And it takes hours to go away on its own.   While something is lodged in my digestive tract, I can’t swallow anything. I can’t wash it down with water, that creates more pain, and forces me to throw up.

It’s also embarrassing. A few weeks ago I went out with friends for dinner. I thought I would try the pizza. At the pub.  But I wasn’t mindful enough. Didn’t chew enough.  Wouldn’t have mattered anyway…bang!  Pepperioni pizza stuck in my throat.

Delightful.  Can’t speak.  Can’t explain to my friends.  Sneak off to the ladies room to throw up. Publicly.  Hard to do quietly.  While I’m bent over the gross public toilet, looking at the filthy floor a kind voice called out to me to see if I was OK.  Hideously embarrassing.  I choked out that I was fine.  And I didn’t leave the stall until I heard the main door open and close again. So I wouldn’t have to face that person.

So I’m not eating out right now.

And I’ve only been eating ‘soft’ foods.  Soggy weetbix.  Mashed vegetables.  Soup. Slow cooked meats that are so tender they are falling apart.  I’ve found that ‘cakey’ muffins have a soft texture that goes down fine. Chocolate melts in your mouth…LOL.

Truth is I don’t have much of an appetite either.  So I’m not really eating much. I should be losing tonnes of weight, on the 600-800 calories I’m possibly living off right now.

I had a barium swallow a few years ago, and that was clear. NO physical deformities. So it was put down to Cricoarytenoid Arthritis.  But it never went away.  And then it got a whole lot worse!

So back to the last few weeks.  The other thing is that food hurts my stomach. Almost every time, after eating, even my very limited diet, I get a stomach ache after eating.  Sometimes it’s very bad, sometimes it’s milder.  But it’s a dull, aching, sick pain.  Like someone is pressing on your stomach, pushing too hard until you feel sick.

It could be an ulcer. So I should probably stop taking my NSAID just in case. But Naprosyn is the difference between me being able to do yoga and some light cardio at the gym and being on the couch. I do NOT want to stop taking it unless I need to. Because I don’t think it IS an ulcer. I’ve had one of those before. This feels different.  I think…

So between the two things, I’m eating not very much. I get headaches and dizziness. This is probably just because I’m not eating much.   Doesn’t help fatigue when you don’t have fuel for your body.

And the other crazy thing? In the last seven weeks I have gain 10 kgs.  That’s physically impossible on what I’m eating!  And extremely annoying.  Flash back to my history of eating disorders. No one likes extra weight, but it really makes me crazy and puts me in a bad head space.  I don’t need the hassle.

Something is causing me to gain a lot of weight fast.  And feel bloated and nauseous ALL the time.

So I told my GP and he’s sending me off to a Gastroenterologist.  He thinks I need an endoscopy and might as well do a colonoscopy while we’re there.  (Sure, cos no one minds colonoscopies. Walk in the park .Ugghh!  I had one a few years ago, and I don’t want another one).

Next available appointment with the doctor my GP referred me to is the 18th of June.  More than six weeks away.  NOOoooo!

Great.  And this was my bright, shiny year of no more surgeries and procedures.  The hospital stays, surgery and procedure and new specialist count seems to be climbing by the day, however.

But my stomach hurts BAD.  Today I ate some toast, and my throat did NOT clamp shut.  This is a good thing.  A very good thing.  So I can eat solid food again.  Carefully.

But once it hit my stomach it hurt like mofo. So I need that Gastroenterologist consult. I really do.  Much as I hate to admit it.  I called them and actually begged them for their next available appointment. With ANY doctor. I don’t care. They should all be competent!

So next week.  Tuesday.  Initial consult with a Gastroenterologist.  I really hope she has some answers.  But I know she won’t have.  She’ll just schedule an endoscopy.  Maybe a colonoscopy.

I just want to eat something nice.  And not have a whole bunch of pain afterwards. Simple request, right?

Apparently not.