RheumaBlog

Same dragon, different day.

… says my rheumatologist. “Liver function is normal. Sugars are great. Sed rate is above normal, but lower than it was this time last year and holding steady. That means the meds seem to be working.”

I don’t like to contradict him, but I tell him how sore my hands and wrists have been since I last saw him in November.

“You’re on the top dose of leflunomide,” he says, “and at 2 grams a day, I can’t see any reason to raise the dosage on the sulfasalazine. How are you tolerating the diclofenac?”

“No problem. But I don’t think it’s doing much.”

“You might be surprised, though, if you stopped it.” He smiles. “Let’s raise the dosage a bit. How’s your sleep now? Amyltriptalene helping?”

“I wish it was.”

“OK. We’ll up that, too. You’re taking a very small dose.”

He peruses my charts, all of which are available to him electronically. The VA has gone completely paperless. On his computer screen he can see what my primary care provider has said about me. The endocrinologist’s report, too, and the results of my recent bone density scan. “You’re osteopenic. You’re teetering on the edge of osteoperosis,” he says, frowning at the screen. “They’ve got you on Vitamin D supplements, but … no calcium?”

I shake my head. “My PCP told me not to take any more because my calcium level was too high, and my Vit. D level too low. She sent me to the endocrinologists. They put me on Vit. D, but also said not to take calcium for now.”

He grunts and scrolls through screens. “I’m back to May 2008, and there’s not a single calcium count that’s above normal. You’ve got rheumatoid arthritis. You’re taking a huge Vit. D supplement, and while they were quite low, your Vit. D levels are completely normal now. You absolutely must have more calcium going in. Ionized calcium. Without more calcium, the Vit. D is leaching it from your bones. You can’t afford to lose it.”

I wait. This sounds like a doctor fight to me. I like and trust this doctor. He has a big heart. He travels to Ghana every year with Doctors Without Borders, bringing his expertise in rheumatology to poor Ghanians. His other job, when he’s not working for the VA, is bringing rheumatology care to local people he refers to as
“the hard-working poor — waitresses and janitors and landscaping workers, construction workers, with terrible disease,” who are uninsured but ineligible for Medicare or Medicaid in Sacramento County. He has four brothers and sisters back in Alabama; three of them have severe rheumatoid arthritis. It was watching them suffer that inspired him to choose this specialty 25 years ago. His younger brother is losing his sight to rheuma.

“I’m prescribing an ionized calcium/Vit. D supplement for you. When it arrives in the mail, stop taking the other Vit. D supplements and take this instead. We must get your bones the calcium they need.” He taps into the computer, making notes, but speaking them as he writes them, so I know what he’s saying there. He turns to me.

“Your increased pain could well be from the osteopenia,” he says. “Thin bones hurt.”

“I had no idea,” I say, surprised. I knew that osteoporetic bones are thin and brittle, and prone to breaking, but I didn’t know they could be painful, too. Nor did I realize I was “teetering on the edge” of osteoporosis. Less than two percentage points, he says gravely. “But no need for drugs to treat that, for now. Hate to add them to the mix you’re already taking.”

He tells me that the VA favors the biologic Humira, but that he’d prefer not to try that just yet. Particularly as my labs are looking so good. “Biologics, in my experience, can be very effective but they carry with them some significant risks. Many people start them, then must stop them because of the increased chances for infection and other possibly serious side effects.” He feels my disease isn’t bad enough yet to put me at risk, particularly since what I’m on looks to be effective.

I sigh. My hands hurt. “However, I would like to add Plaquinil to the current cocktail.” Since I have an appointment coming up with the opthalmologist in late March, he’ll wait until I’ve seen him before he prescribes it. “They’re experts here on Plaquinil eyes,” he says. “We have many rheumatoid arthritis patients taking it, so they’re very good at what they do. They know what to look for.”

Plaquinil can cause tears in the retina, so before he prescribes it, he wants a baseline eye exam. And then twice-yearly follow-ups with the eye doc. I nod.

He asks me how my appointments with PT and OT have gone, and smiles when I tell him. “They are indespensible,” he said. “OT in particular. We’re very lucky to have them.”

I tell him I tried acupuncture this week, and plan to go back for the next several weeks for more treatments. “That’s wonderful. I hope it helps you. It relieves pain for many people.” He tells me he likes my gumption.

Finally, he says, “You’ve lost a considerable amount of weight,” and smiles again. “I know how hard you’re working on this. I know it’s not easy, but it helps a great deal.” He reaches out, shakes my hand very gently. “You’re doing well. Be patient. This disease changes all the time, but we’re staying on top of it.”

While I always hope he’ll have a cure for me, or a way to stop my pain — both of which hopes are mostly wishing on stars, I still leave his office with a smile on my face. I always do. And I feel very lucky to have such a compassionate man as my rheumatologist.

12 thoughts on “You’re doing well …

  1. WarmSocks says:

    Wow! It sounds like you have a great rheumy. Glad to hear it was such a positive appointment.

    According to my first rheumy, the retina problems with plaquenil were seen in soldiers fighting in Vietnam who took massive quantities of the drug for an extended period of time so that they wouldn’t get malaria. For RA it’s not prescribed at that high a dose. It’s still good to be cautious, thus the eye exams, but I think vision problems are pretty rare. AND combination therapy is a stepping stone to a biologic.

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  2. Helen says:

    What a great rheumy. That makes all the difference. I hope your experience with plaquanil is positive!

    Can I ask a question? What do you think of the Amitriptyline? My rheumatologist and PCP have both been pushing for me to start it for insomnia and possible intersticial cystitis (a bladder issue). I’m so reluctant to be on yet another drug, but the IC has been bugging me more lately and I’m starting to wonder if I should just give in and try it.

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    1. Wren says:

      WarmSocks: Thanks for the fascinating info about plaquenil! I’ve taken it before, back in the 80s, for about 6 months. I self-stopped it back then because during my second eye exam after starting it, the eye doc found a tear in my retina. The rheumatologist the U.S. Army sent me to felt that the plaquenil was not the culprit, but that the tear (which was asymptomatic) had possibly been there all along. I was frightened and refused to take it anymore. My current rheumatologist also feels that it’s very unlikely the plaquenil could have caused that retinal tear… so I’m going to give it another shot, based on the positive things I’ve learned about the drug since then.

      Helen: So far, amyltriptaline has had absolutely no effect on my on-again, off-again insomnia, but I’ve only taken it as needed, not regularly, and at a 10 mg dose. My doc is increasing that dose to 25 mgs, and says that’s still a rather small dose. He feels it should be effective and safe. I don’t blame you for not wanting to take yet another med, but insomnia is such a vicious thing — that fatigue can rob the joy from life and make pain even more intense. You just can’t fight it when you’re wiped out. Anyway, why not try it, at least? If it’s not effective, no big deal. But if it is, getting that precious sleep may well be worth swallowing one more pill. I wish you the best of luck with it!

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  3. sarah says:

    You are so lucky to have such a wonderful rheumy! I am completely jealous. If only my rheumy could be half as nice as yours it would be a whole lot easier to make myself go to his appointments! Thanks for giving me some hope that they are out there.

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  4. WOW! A human rheumy – there’s a novelty! ;o) Mine can be human … on a good day with a following wind… but not to this extent. What a nightmare about the osteoporosis – but at least he’s probably caught it in time.

    So sorry though that you haven’t come away with a cure for the sore hands – although with this disease I suppose it’s no great surprise. We’re all still waiting for the magic cure. Good to know that Humira’s there waiting if you do need it – frustrating to know you’ll need to get worse in order to see if it works; but then again, if the plaquinel works then all might be fine.

    I’ve been on plaquinel for a couple of years now – apparently the eye problems on the dosage for RA about a million to one chance (which is comforting unless you read Terry Pratchett!) but it’s best to check. Over here they make sure you have regular eye exams … which reminds me, I didn’t include those in my hidden costs post; I have to pay for them!

    Good luck with the plaquinel (hydroxychloroquine) and the calcium.

    Polly

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  5. Leslie says:

    I never get to see my rheumy…I see his NP who has the personality of a brick wall and cuts me off when I try to talk. So, I just keep talking so she will hear me (grins). When I have seen my rheumy he is very nice and compassionate. I had to switch rheumys cause my job was gonna change insurances and my previous rheumy did not take Humana…well we never switched and I had already changed docs. I’m seriously considering going back to my old rheumy if he will take me back. His NP was very nice and understanding and that makes a different. I’m glad you have a caring doc….it sounds like he really does care and that makes a difference 🙂

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  6. Chelsea says:

    Hi Wren,

    It’s a rarity to get such an understanding rheumy. Hang onto him, but I hear your sighs and hope you won’t fall into such a pattern as I have.

    What has been your history with Methotrexate and/or Immuran, or discussions with the doc about those?

    I was on methotrexate for a while, but then for a couple of years I had to stop mtx due to a non-joint, non-blood issue, and took Immuran and then added Arava to it instead. But my wrist damage was progressing pretty fast during those two years being off the methotrexate, and then I got some actinic keratosis (precancerous skin spots)and got nervous about continuing the Arava (leflunomide) and Immuran because of that. So after much research regarding mtx side effects, and discussions with my doctors regarding my test/procedure results, I finally decided to switch back to taking mtx again and have been back on it for the last 5 or so years. I had added Kineret injections to the methotrexate for several months at one point, but like the other biologicals, infections are an issue and I did run into that.

    It (mtx – and probably prednisone) does help my joints a lot in terms of that burning/soreness type pain (I still have pain but of different quality and fatigue), but unfortunately I am still progressing, despite having increased the dosage. Besides infections, money and insurance coverage is a big factor in my not starting a biologic right now. If you have good coverage for biologicals though, perhaps you should give them a try sooner rather than later. At least you’ll know you tried it when you could, even if it doesn’t work out. Ask your doc what the main reason(s) is/are that his patients have stopped their biologicals and see what he says.

    Sometimes it takes adding prednisone, and/or switching to different NSAIDs (there are lots to try if one doesn’t seem to be cutting it for you) and/or adding Tylenol Arthritis to the mix to help in lessing that pain. Narcotics are another option but a last ditch resort, and of course none of these should be used in place of changing/adding dmards to try to get the pain under better control and slow progression. Daypro (oxaprozin) was a good NSAID for me when I was covered under insurance. It’s generic, but not on the $4 dollar lists at the
    pharmacies. That is a once-a-day NSAID. These may help with that pain, but won’t stop the progression though. I would love to be able to get off of the NSAIDs and Prednisone and hope to some day to avoid the ong terms side effects of those. Knock on wood, I don’t seem to have any yet, despite having been on them for over a decade.

    I do recall that burning and soreness quality as I had that in the first years, my pain is of a different quality now (I occassionally get the burning/sorness still but nothing like before), some of which comes from the damage that has already occurred and some from tenosynovitis and some from swelling. But that burning/soreness was bad in the beginning before I got to this point and so I hope you will continue to let your doctor know how uncomfortable that is, that you’re
    still concerned it’s a sign of progression, and pursue discussing the further options with him on a timely basis, ie don’t let it drag on too long if the pain is still bad or if you see/feel progression. I regret not realizing to be more aggressive and faster/aggressive in getting my symptoms under much better control,
    because, at least in my case, it’s led to damage I’d rather not have to deal with now. I know we have to live with some pain, but maybe sometimes we’re too accepting of how much pain we have to live with. I wish I could include a picture of my wrists with this so you could see what I’m talking about.
    Chelsea

    Rheumatology (Oxford). 2010 Jan;49(1):91-8. Epub 2009 Nov 16.

    A systematic comparison of combination DMARD therapy and tumour necrosis inhibitor therapy with methotrexate in patients with early rheumatoid arthritis.
    Ma MH, Kingsley GH, Scott DL.

    Department of Rheumatology, GKT School of Medicine, Weston Education Centre, King’s College London, 10 Cutcombe Road, London SE5 9RS, London, UK. margaret.ma@kch.nhs.uk

    OBJECTIVE: We examined how combination DMARD therapies and TNF inhibitors therapies plus MTX (TNF/MTX) affect clinical and radiological outcomes compared with MTX monotherapy in early RA.

    METHODS: We systematically searched EMBASE, PubMed and Ovid Medline for randomized controlled trials (RCTs) of combination therapy in early RA. We evaluated ACR responses, withdrawals for inefficacy and toxicity, HAQ and radiographic progression. Meta-analysis using Review Manager evaluated random effects odds ratios (ORs) and random effects weighted mean differences (WMDs) between treatments.

    RESULTS: A preliminary search identified 2029 citations; 15 were relevant RCTs
    (4200 randomized patients). Patients with active disease were enrolled. Compared with MTX monotherapy, both combination DMARDs and TNF/MTX increased ACR20-70 responses (OR 1.64-2.02 and 2.03-2.30, respectively), reduced withdrawals for inefficacy (OR 0.52 and 0.29), reduced HAQ (WMD -0.17 and -0.16) and reduced annual X-ray progression (WMD -1.20 and -0.84%). DMARD combinations increased withdrawals for toxicity (OR 2.69; there was no difference with TNF/MTX). The only
    head-to-head RCT showed comparable efficacy for combination DMARDs and TNF/MTX combinations.

    CONCLUSIONS: In early active RA, both combination DMARDs and TNF/MTX are more effective than MTX monotherapy. DMARD and TNF/MTX combinations had equal efficacy on ACR response, withdrawals for inefficacy, disability and erosive progression. There is an apparent advantage for TNF/MTX combinations in the effect on toxicity with fewer consequent patients. We conclude that there is strong evidence in favour of combination treatment for RA but there is still uncertainty about which
    regimen is preferable.

    Ann Rheum Dis. 2009 Jan;68(1):33-9. Epub 2008 Jan 29.

    The effectiveness of leflunomide as a co-therapy of tumour necrosis factor inhibitors in rheumatoid arthritis: a population-based study.

    Finckh A, Dehler S, Gabay C; SCQM doctors. Collaborators (62)Colla F, Suter JB, Chamot AM, Lehmann T, Martin A, Wicht F, Marbet Grierson G, Tinner H, Aellen P, Elmiger B, Hafelin F, Muller-Werth B, Wiedersheim P, Buchler I, Gerster JC,
    Rappoport G, Cunningham T, Brucker R, Kloti R, Glenz D, Pancaldi P, Diethelm U, Sturzenegger J, Zenklusen C, Buchard PA, Altermatt R, Messikommer M, Fluck A, Wuest P, Sauvain MJ, Frey D, Pfister S, Thiebaud G, Eigenmann B, Muff L, Keller F, Brunner H, Schwartz GM, Buchs N, Ziehmann M, Gut C, Maager R, Raccaud O, Saxer M, Maclachlan D, Laubscher A, Reich-Rutz C, Schaub K, Schlor-Dorr U,
    Widmer M, Baumgartner E, Davoine GA, Christen B, Kowalski M, Gratzl S, Bodmer F, Hunkeler M, Gaeumann U, Caravatti M, Lamoth M, Schonbachler J, Seglias J.
    Division of Rheumatology, Department of Internal Medicine, University Hospital of Geneva, 26 Av. Beau-Sejour, 1211 Geneva 14. Switzerland. axel.finckh@hcuge.ch

    BACKGROUND: Randomised trials have demonstrated that the efficacy of anti-tumour necrosis factor (TNF) agents is significantly increased by concomitant methotrexate (MTX) in rheumatoid arthritis (RA). In clinical routine, anti-TNF agents are commonly prescribed with other disease-modifying antirheumatic
    drugs (DMARDs) than MTX, however their effectiveness in combination with anti-TNF agents is not well established. OBJECTIVE: To compare the effectiveness of leflunomide (LEF) and other conventional DMARDs with MTX as co-therapy to anti-TNF agents in RA.

    METHODS: All patients on anti-TNF agents and conventional DMARDs within the Swiss Clinical Quality Management (SCQM)-RA database were included (n = 1218) and categorised according to the type of co-therapy into anti-TNF+MTX (n = 842),
    anti-TNF+LEF (n = 260) and anti-TNF+other DMARDs (n = 116). Drug discontinuation rates and incidence of toxic side effects were analysed using Cox proportional hazard models. Progression of radiographic damage, the evolution of functional disability and the improvement of RA disease activity were analysed using longitudinal regression models, adjusting for potential confounders.

    RESULTS: The overall discontinuation rates of anti-TNF and conventional DMARD combination therapies were relatively high with a median survival of only 16 months (interquartile range (IQR): 10-37), but they did not differ between the three regimens (p = 0.69). The progression of radiographic damage (p = 0.77),
    functional disability (p = 0.09) and RA disease activity (p = 0.33) were also similar between the different regimen. In addition, no significant difference in the frequency of adverse events emerged.

    CONCLUSION: Overall these results suggest that LEF and potentially other conventional DMARDs offer an effective and safe alternative to MTX as co-therapy in combination with anti-TNF agents.

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  7. Oh wow! You have such a great rheumy!!! I am/was on the same DMARDs as you. Just wanted to mention that 2g sulfasalazine didn’t work all that well for me, and when my rheumy upped it to 3g, i was so much better that i was near remission! But that was when i was on MTX, SSZ and HCQ.

    Good luck with HCQ and calcium! I do my eye checks only annually. 🙂

    Steph

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  8. tharr says:

    It makes a huge difference having a good rheumatologist. My first one was a jerk. Yours sounds like a great one and having RA in his family, I’m sure drives him to stay on top of changes.

    I think the cold weather has been bothering everyones hands this winter. Mine don’t normally hurt this much through winter, but we have had an unusually rough winter this year. I hope the pain eases up soon for you.

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  9. Chelsea says:

    Hi Wren,

    It’s a rarity to get such an understanding rheumy. Hang onto him, but I hear your sighs and hope you won’t fall into such a pattern as I have.

    What has been your history with Methotrexate and/or Immuran, or discussions with the doc about those?

    Methotrexate and prednisone do help my joints a lot in terms of that burning/soreness type pain (I still have pain but of different quality and fatigue), but unfortunately I am still progressing, despite having increased the dosage. Despite having tried other DMARDs including Arava and Immuran, and for a short while Kineret injections. Besides infections, money and insurance coverage is a big factor in my not starting a biologic right now. However, if you have good coverage for biologicals at this time, perhaps you should give them a try sooner rather than later. At least you’ll know you tried it when you could, even if it doesn’t work out. Ask your doc what the main reason(s) is/are that his patients have stopped their biologicals and see what he says. The specifics of that answer might help in deciding what risks you are willing to take for yourself. It also might bring out details of your particular situation that he may be concerned or not concerned about that he hasn’t verbalized to you. I often imagine that I’d like to try either Humira or Rituxan if I had the coverage. Perhaps Enbrel. But here I sit, just waiting while the damage to the joints continues.

    Sometimes it takes adding prednisone, and/or switching to different NSAIDs (there are lots to try if one doesn’t seem to be cutting it for you) and/or adding Tylenol Arthritis to the mix to help in lessing that pain. Narcotics are another option but a last ditch resort, and of course none of these should be used in place of changing/adding dmards to try to get the pain under better control and slow progression. Daypro (oxaprozin) was a good NSAID for me when I was covered under insurance. It’s generic, but not on the $4 dollar lists at the pharmacies. That is a once-a-day NSAID. I take a different once/day nsaid and have added Tylenol Arthritis strength once or twice a day to help dampen the pain further. I would love to be able to get off of the NSAIDs and Prednisone and hope to some day to avoid the ong terms side effects of those. Knock on wood, I don’t seem to have any yet, despite having been on them for over a decade.

    I do recall that burning and soreness quality as I had that in the first years, my pain is of a different quality now (I occassionally get the burning/sorness still but nothing like before), some of which comes from the damage that has already occurred and some from tenosynovitis and some from swelling. But that burning/soreness was bad in the beginning before I got to this point and so I hope you will continue to let your doctor know how uncomfortable that is, that you’re
    still concerned it’s a sign of progression, and pursue discussing the further options with him on a timely basis, ie don’t let it drag on too long if the pain is still bad or if you see/feel progression. How to communicate that EFFECTIVELY to the doc is a whole other hurdle in and of itself, and at best, but still falling short, can result in visits such that you just had. I regret not realizing to be more aggressive and faster/aggressive in getting my symptoms under much better control, because, at least in my case, it’s led to damage I’d rather not have to deal with now. I know we have to live with some pain, but maybe sometimes we’re too accepting of how much pain we have to live with, even if it’s not as bad as before.
    Chelsea

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  10. Clare says:

    i’m also on plaquenil. as much as you love your rheumatologist, i would really do your own research into biologics if your insurance will cover them. enbrel is what has aloowed me to be as active as i am. i am going to ask my rheumy what he thinks of switching to another, as maybe enbrel has stopped for me (as apparently they can do), but really, they are as close to miracle drugs as we have. the side effects in my experience are NONE, and i was even pregnant on enbrel. i think it’s worth the risk to save your joints. do research so you can make up your own mind, no doctor knows as much as YOU do about what’s right for you.

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  11. rositta says:

    What an interesting read; I had no idea that Rheuma could have been responsible for my retinal tear and near blindness last year. I’ll have to ask the Ophthalmologist. Too bad, I just saw him today. Hope the acupuncture helps…ciao

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