Latest visit to my rheumatologist…or should I say LAST visit

by admin on September 19, 2012 · 21 comments

I saw rheumy yesterday.  I didn’t expect it to be a good visit.  I am beyond fed up.  Beyond tired of this pain.  Beyond “let’s try this and wait and see.”

I have failed methotrexate in the most convincing of ways.  My GP (primary care doc) was so disturbed by what happened to me on methotrexate that he said he would never prescribe it for me again.

I have failed sulfasalazine (salazopyrin).  The headaches, nausea and diarreah weren’t great.  But the depression was awful.    And it didn’t help my symptoms.  I took it for 5 months.  Long enough to fail.  Rheumy says I need to take it for 6 months to fail it ‘properly’.  Had I known that back then, I might have persevered for another month.  Bottom line:  It did nothing for me.  Considering my pain and joint inflammation is much worse now, I don’t see the point in trying again.  If it didn’t help then, why would it help now?

I have failed plaquenil.  Admittedly it’s well known that plaquenil is only for very mild Rheumatoid Arthritis.  But I’ve been taking it for many years now.  It doesn’t hurt.  But it doesn’t help.

I won’t take Arava (leflunomide).  It is so similar to methotrexate that even my rheumy has said he’s not comfortable with giving it to me.  Why?  Because it can stay in your body for up to two years.  There is a washout process, but that will only get rid of what is in your digestive tract.  Once its on your body, its there to stay.  And if it causes the same side effects that methotrexate did, they I would be in very big trouble.  Life in the psych ward type trouble.   So Arava is an automatic fail.

I still take Naprosyn. Right now I am back up to 1500mg per day.  Too much.

I have also tried voltarin, Mobic, celebrex, ibuprofen…I’m sure there were more.  Naprosyn is the only one that works.

So what is keeping me going?  Prednisone.  20mg makes life quite good.  Only mild aches and pains.  15mg makes life pretty good.  Mild to moderate daily pain…and a monthly mega flare.  10mg is constant moderate pain, with worse pain at night.  No sleep without oxycodone, and still several nights a week lying awake because of pain.

This is what I told rheumy.  He is frustrated.  I understand this.  He said how can he help me when I won’t take the medications?

It’s not a matter of won’t.  It’s can’t.  Different thing.

I asked him about biologics.  Did he think they would help me?

He said he didn’t know, but he’d never be able to prescribe them.  And the side effects of those medications are really scarey.  He said they can cause MS – or demyelination of the nerves.  They can cause all kinds of cancers.  They can kill you.

He told me to get down to 7.5mg of prednisone and we would see how I was going.

I said no way.  I’ve just done that.  On 7.5mg of pred I am mostly couchbound.  I don’t go to the gym.  I don’t walk, I don’t work.  My life is not a life.  I told him I have spent the last 4 years in constant pain, and right now I don’t even know how I did that.  I can’t go back to that. Prednisolone has reminded that life with less pain is possible.  The headache and anxiety that goes along with it are worth it.  They are not as bad as the pain without it.  I reminded him that I lost my career, my marriage…I bought a walking stick!  (And yes, to me, needing a walking stick to walk IS that bad).

I got upset.

And he?  Wrote me a referral to the pain management clinic and said there was nothing else he could do.

He. Dumped. Me.

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{ 20 comments… read them below or add one }

C September 19, 2012 at 4:23 pm

What an asshole. A doctor shouldn’t pawn you off on someone else just because you aren’t an easy simple solution. :-(

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admin September 20, 2012 at 2:13 pm

Yep, I just got too difficult for him. Isn’t that why he did 12 years or so of schooling? So he could handle the tough cases? Well said..what an arsehole!

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Sarah September 19, 2012 at 5:09 pm

I know how you feel, I survived cancer- my RA was caused my huge doses of chemo. Often with the RA I think it would be better to have lost to the cancer, it has killed my career, my lifestyle and my joy of life. And the drs are just-well you have to adjust to RA- its better than cancer-BULLSHIT.

Find another Dr and demand an application for the biologicals- RISKs aside, anything is better than living with RA.

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admin September 20, 2012 at 2:12 pm

Agreed, Sarah. Life with uncontrolled RA is not much of a life. Its so not fair that cancer treatment put you in this crap place – but i’m very glad the cancer didn’t win. Some days it is impossible to find much joy in life with RA, but where there is life, there is hope. What treatments are you on now? Does having had cancer reduce your options? Its hard to understand doctors attitudes. But when the doctor that is treating you doesn’t understand how painful and horrible this disease is, what hope for the rest of the world???

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Sarah September 20, 2012 at 5:45 pm

The cancer caused many problems, including a stroke and RA. I am on methotrex 20mg, prednisone 10-20mg, sulfa 3 x bd, warfarin, folic acid and pain relief. Due to my stroke and warfarin i can not take nsaids, so i swap between mersyndol, panadine forte, endone and oxycontin, all with out much relief. I have been on this for the last 3 years, and am still trying to get on the biologicals.I have six kids and can not remember what it is like to have fun with them anymore!!

I think the doctors have no idea what this disease is like, I am only 44 but move like I am 90! I just want the simple things back- like to do up my own bra- I would kill to waer heels again!

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admin September 20, 2012 at 8:39 pm

I’m so sorry, Sarah. You have been through so much. I understand some of that…I am 42 and feel 90 many days. But with prednisone I can have some pretty good days…so I am lucky.

I think its just insult to injury that doctors don’t understand how truly debilitating and life destroying RA is…terms like ‘life limiting’ just don’t cut it. You are very strong, Sarah. You deserver better treatment…Have you looked for a second opinion? Some rheumies are more willing than others to prescribe biologicals. You certainly have earned the right to try. I hope you get the opportunity to see if they help you. Take care.

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Sarah September 27, 2012 at 11:34 am

Thanks- I had an appoint yesterday- I am trying one more med for the next 12 weeks- then my guy said I am going on the bios- yeah!!

I also got some info on the new criteria and have posted it under your post on how to get on the biologicals.

Sarah September 27, 2012 at 11:35 am

Also- I am surprised you dr did not tell you that if you can not tolerate methotrexate you can not have the bios-see other post.

Michelle September 19, 2012 at 7:29 pm

What an arse!!!! I’m on another biologic and am failing that one. I have to persevere until I’ve used the last of the prescription which is beginning of December. I won’t be able to try my LAST option of biologics if I don’t keep taking it.

Biologic side effects can by scary but that can also make a HUGE difference to your life. Demand a new doctor and DEMAND to be treated with a semblance of respect.

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admin September 20, 2012 at 2:08 pm

Thanks Michelle. I have an appointment with a new Rheumy in November. Sorry to hear your current biologic isn’t working…more so to hear that you’ve only got one more? Stupid, stupid rules…I hope you get some improvement.

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Patricia Mays October 10, 2012 at 9:45 am

Hello Again Arthritic Chick

I’m sorry you had an MD who didn’t really listen. Don’t worry about your low doses of prednisone,. When I take it (bursts that can last months) I usually begin with 60 mg. for at least 3-4 days and taper by only 10 mg. every 3 days after. I use an injection of Toradol 60 mg. just to get the inflammation under control. After chemo any chance I had of taking NSAIDS became history as I literally vomit up mucus and bright red blood. I’m allergic to all sulfanomide meds, so that’s not an option. Yes, you’re quite right about the side effects of drugs like methotrexate, once used only for chemo in cancer patients. It’s called chemo brain now. All new info say biological meds are safer and better, some work in 2-3 weeks.

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admin October 10, 2012 at 11:41 am

Hi Patricia, yes biological meds are the new ‘holy grail’…just a shame they are so expensive, and therefore so hard to get! Thanks for putting my prednisone use into perspective…sometimes I think that the doctors just try to scare me…they don’t realise compared to severe, crippling pain every day, osteoporosis and weight gain aren’t that scarey! The doses you take must come with more risks though. But I know…there really isn’t a choice, is there?

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Patricia Mays October 10, 2012 at 9:51 am

there’s nothing wrong with using pain meds safely. You do what you need in order to survive. A little narcotic mixed w/a low dose of tylenol, doesn’t hurt people w/o liver damage. It’s very safe and yes, hospital’s still use these meds most often for that reason.

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admin October 10, 2012 at 11:35 am

Yes, I take narcotic pain relievers dailly. Ever now and again I skip my pain meds, tell myself I can tough it out. Its ALWAYS a bad idea…I’ve been taking oxycodone daily for several years. My liver is fine. As you say, you need to do what you need to do in order to survive. Thanks for sharing your thoughts.

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Patricia Mays October 10, 2012 at 9:53 am

After reading these post I consider myself fortunate to have had severe life threatning issues with cancer and asthma because inadvertently the drugs given me helped thr RA all along for 30 years before I reached this point, not that it’s a good thing.

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admin October 10, 2012 at 11:33 am

Hi again Patricia. You are an amazing lady, taking such a positive view to your other health battles! Hats off to you.

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Bob May 14, 2013 at 10:31 am

Heya i’m for the first time here. I found this board and I in finding It really useful & it helped me out much. I hope to give one thing back and help others like you helped me.

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admin September 28, 2012 at 11:50 am

Thanks Sarah…checking it out. So happy that you will get the biologicals! What med are you trying in the meantime?

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admin September 28, 2012 at 11:52 am

My rheumy told me that for four of the biologicals must be taken with methotrexate. The other four you can take without. Has this changed too??? Its ridiculous that methotrexate is required. There are plenty of studies that show some biologicals are just as effective without methotrexate. Must go dig those up!

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Sarah September 30, 2012 at 2:00 pm

arava-

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