Rheumatologist review and update on Orencia and the fear of Multiple Sclerosis

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So it’s over 7 months on Orencia and its time for my review for medicare approval.  I have had a few good days, but a lot of megaflares.  I always have to think hard before I got to my rheumatologist, to decide what I want to do.  She is a great rheumy, she’ll tell me what she thinks, she’ll ask me what I think, and then we decide together.  Sometimes we do it her way. Sometimes we do it mine.  I think it’s a good example of how a chronic patient’s relationship should be with the primary specialist in their care.  Collaborative, with mutual respect for eachother’s knowledge and experience.

But we didn’t talk much about Orencia.  I mentioned a few side effects I’ve been having, and she immediately jumped to Multiple Sclerosis (MS).  She admitted she’d had two patients in the last month present with MS, so the disease is at the top of her mind right now.  But that what I was describing sounded worrying to her.  So I googled symptoms of MS.  This is the basic list from WebMD.

  • Clumsiness or a lack of coordination
  • Loss of balance
  • Numbness
  • Tingling
  • Weakness in an arm or leg
  • Bladder control problems
  • Trouble walking
  • Dizziness
  • Fatigue
  • Sexual problems
  • Speech problems
  • Cognitive problems
  • Muscle spasms
  • Vision Problems
  • Difficulty swallowing

 

As you look down that list, I’m betting most of you have most of those.  I’m pretty sure it’s one of those situations where how often and how severely you experience these symptoms will dictate the level of concern.

I have all of the things on this list – but they are pretty vague.  And my ‘sexual problem’ is actually the fact that I’m single, and not having any.  So I guess that one doesn’t count! LOL.

But the clumsiness or lack of co-ordination I have had for years. I often feel like someone has just tipped the world sideways, and I lose my balance just walking on level ground.  But it only happens sporadically.

Numbness and tingling. Since starting Arava I have had lots of numbness and tingling, even painful pins and needles in my hands and feet.  My rheumatologist wasn’t concerned, and told me to continue with it, as it seemed to be helping some.  I have also woken in the morning to find my arm

completely numb.  I wasn’t lying on it – in fact I was lying on the other side.  And it took several minutes to ‘wake’ up the arm.  A few months ago I woke in the night because I needed to go to the toilet.  I went to stand on my leg and fell down because it was completely numb.  But that has only happened twice, over the last year or so.

Trouble walking. LOL!  Don’t really have to go into that one too much.  We all have trouble walking some days!

My fatigue has been particularly bad lately, but it’s clearly a common Rheumatoid Arthritis symptom.  Dizziness comes along with methotrexate for me, not to mention Targin and Oxynorm (oxycodone).

Warning! TMI ahead!!!

Bladder problems. Incontinence.  I have to admit I’ve been experiencing this lately.  Spending some time in the ‘Depends’ aisle at the supermarket.  Nothing says ‘sexy single lady’ like having a box of those in my trolley.

Seriously though, this is one of the worst experiences I’ve had.  I’ve only had two ‘accidents’, and they were at home.  I was alone. Thank the gods.  The humiliation of losing control of the most basic bodily functions, and the fear of that being a regular occurrence is pretty universal.

But I also have sciatica.  Shooting pains from my hip to my knee, and sometimes beyond down my calf muscle.  18 months ago my lumbar MRI showed several herniated discs and nerve impingement.  So sometimes the nerve gets impinged, it causes the shooting pains…and sometimes it affects bladder control as well.

I probably need to have another lumbar spine MRI to get that checked.  But a nerve impingement is a more likely cause than MS.

Speech problems and cognitive problems.  Along with the fatigue comes the brain fog.  Forgetting your sister’s name when she’s sitting right in front of you.  Not being able to find the word for those big grey animals, the ones with tusks.  They live in Africa. You know…

All that stuff is pretty normal. Again, I’m usually dosed up on oxycodone. It does affect my memory and cognitive abilities.  As RA itself does.

Vision problems. This one does worry me. There are times when I can’t focus my right eye.  I’ve seen my ophthalmologist recently, and she said my eyes are fine.  Yes, I have cataracts but they are growing slowly. My eye pressures are not too bad.  And my optic nerve is fine.

If my eyes are fine, vision problems could then be neurological.  Possibly MS.  But, I have Sjogren’s. I have very dry eyes.  It could also be as simple as that.

And the last one is difficulty swallowing. I have had that for many years as well. I had a barium swallow a few years to rule out any obstructions. There were none.  So it was put down to cricoarytenoid arthritis.  I used to only have trouble with food like meat, it would get caught in my throat and be very painful.  Again with the TMI, but I’d have to vomit it back up, because it would not go down!  And it’s incredibly painful having it stuck in my throat.  But now it sometimes happens with soft foods as well. Sometimes drinking water feels like I am trying to swallow a golf ball.  But cricoarytenoid arthritis still fits the bill.

Put it all together and it might mean something.  Sometime neurological.  But it might not.

How to find out?  My rheumatologist ordered a Brain/full spine MRI to look for lesions and signs of demyelination.  And a referral to a neurologist.

She also did a basic neurological exam.  My foot reflexes are abnormal, but my knee reflexes are fine.  I lose balance when trying to stand with my eyes closed.  My arm and hand strength is good, but my leg strength, particularly the left is poor.  Again with the ‘I have arthritis’ though.  She pushed and pulled at my legs, I’m not sure what she was looking for. But she recommended a neurologist work me up properly.

The MRI will leave me out of pocket up to $1000.  Finances are tough. So I ask myself, DO I really NEED an MRI?

I honestly believe that half of these symptoms are drug side effects and the other half are explained by inflammatory arthritis.  So I don’t really want to spend that kind of money on something I don’t need.

I think I probably need the lumbar spine only. But then, if I’m doing that, should I just go get the full spinal/brain scan and be done with it?  Then I would know for sure?

We talked about it.  And I’ve thought about it some more.  And I’m going to (with my rheumy’s blessing) stop Arava, stop methotrexate completely for a few weeks,  and just stick with Orencia and prednisone.  I’ll take Cymbalta for a few more weeks, and then stop that one too.  When I think about it, the fatigue, cognitive problems and numbness have gotten worse since starting Cymbalta.  Perhaps a lot of this is due to Cymbalta?

But I don’t want to stop everything at once.  First get the methotrexate out of my system. I never feel great on mtx.  Arava stays in your body for literally up to 2 years.  So it may take time to see a difference from stopping that.  But I’ll give it two months and see if the neuropathy, tingling, numbness etc improves.  And I’ll stop the Cymbalta soon.  I don’t think I’ve really felt much benefit.

And THEN, if not, I will go and get the MRIs.  Let’s face it, if it IS MS, a month or two isn’t going to make a big difference, being that I’ve had these symptoms for a very long time.  And I really believe it’s just a combination of drug side effects.

My guts are telling me to give my body a break.  Take some of the load off my liver, and just see how Orencia is on its own.  Prednisone I have to stay on, but I’m slowly tapering.  I can top up with Naprosyn when I have full body mega flares.

And if it turns out that stopping the drugs doesn’t make me feel better, or the full body mega flares become daily fare, then I just start the drugs again.  Starting and stopping biologicals is not a good idea. But all the other drugs (except prednisone) can be started and stopped at will.

And so end result?  Another four months of Orencia, assuming medicare approves the application.  My bloodwork was basically fine. Better than usual, in fact.  So I don’t foresee any problems there.

And we wait and see.

5 COMMENTS

  1. That’s a big one to absorb, and you have to wonder, some days, how many ants you trod on in a past life! Sounds like a sensible plan though – eliminate some of the obvious possibilities in a way that WON’T cost more money – which would create more stress, and then re-evaluate.

    • LOL Karen, I’m thinking it was quite a few ants…but yes, you’ve hit it on the head. More financial stress I don’t need. Conservative approach 🙂

  2. I think that sounds like a sensible approach. The visual thing could also be attributed to the pred. Breaking it down and trying to eliminate the drugs as a possible cause makes good sense to me. You basically have a possible alternate cause for each of the listed symptoms, so taking this route before lashing out big money is probably what I’d do too. Here’s hoping you’re right and one or more of the drugs together are the reason for the symptoms. Good luck.

    • I had the MRIs. They found small lesions in my brain, but they didn’t think it was MS. They were put down to small strokes, and white matter disease. No treatment, except blood thinners, and BP meds to reduce stroke risk. And all the symptoms remain!!! you get used to them, right?

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