Dilemma central...antidepressants, tendonitis, arava and miracles

General
1

So I have tendonitis in feet/ankles, hip, elbow, maybe wrist? Already take NSAIDs, arava (10mg daily for 4 months) and panadol osteo. Nothing helping.2 months on just getting worse...finally I go to the GP and she suggests going on antidepressants (either an old style, endep or the new type like efexar).

I am not depressed. Dr knows I am not depressed but thinks it will help with pain for the tendonitis. Problem is I already have terrible brain fog since starting arava and have reduced my hours at work hoping extra rest will help. Antidepressants have a known side effect of brain fog for some. I am aware they can help with pain but I am uncertain about antidepressants when I am not depressed. My bigger concern is that it sounds like the arava is not working and maybe I need to focus on that??? Meanwhile I am also trying to decide if I should have hip, knee xrays to see if the slight bone spurs of two years ago in my hip and the slight joint narrowing in my knee have got worse and causing this. I am also wondering about ultrasound and steroid shots for hips as a short term relief (had once before).

Ok rave over...going to the drs is often a mixed experience...sorry...I just have four questions:

1. Has anyone found antidepressants helpful for tendon pain?

2. Physio versus steriods or both? What have others found helpful? How about dry needling?

3. How quick can joint change happen?

4. How long to give arava? If there is anyone out there who maybe had only slight improvement for first 4 months on arava but then by 6 months were praising the arava god for a miracle remission, I would love to hear from you...especially if the remission was accompanied by the disappearance of arava side effects like, nausea, intermittent GI stuff, brain fog and intermittent hair loss ;-)

Thanks everyone..so sorry I ranted so long.

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I suppose what I think is pretty simple really. And that is, if you've got PsA you need PsA drugs to sort it. And with PsA drugs, trial and error / wait and see are the order of the day. However, 3 months is the time period that I've heard time and again for DMARDs from rheumatologists and others with PsA. Then add another month just in case. I would not be happy taking Arava for 6 months while actually getting worse and randomly topping up with anti-depressants. In fact I'd be mad as a bag of frogs.

I'd prefer physio to steroids but they have different purposes. Movement's ongoing and essential .... whatever movement is possible and needed. But steroids have their place in a crisis and while waiting for more sustainable drugs to work. I'm not sure it's a case of 'either or'.

I got secondary arthritis of both knees during a severe flare within 2 and a half months, which was the time between x-rays. The joints were extremely swollen and oa was helped along by muscle wasting as I couldn't walk for much of that time. Secondary oa is one of the things that can happen to joints that PsA is going for. I don't know if there are any guidelines for how quickly joint damage can occur, but I do know that caution is required.

I kind of wonder why you're mentioning remission ... I like your style! But the first thing is to improve, maybe even gradually! And that would not seem to be happening on Arava, quite the opposite.

So, what are the treatment protocols in Australia? Is it the old 'try 2 DMARDs then be considered for biologics if they haven't worked'? In your shoes I'd be wanting that second DMARD pronto. Or to be fast-tracked to biologics. What are the options?

Oh, and I just don't know about anti-depressants. Maybe they would give you a lift. But to me that sounds like fiddling while Rome burns.

Incidentally, I've been where you are. I can't remember how long I was on Mtx and Sulfasalazine, waiting for the miracle .... years I think. That's probably why I sound a bit grumpy, I don't want the same to happen to anyone else.

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Hi Sybil, thanks so much this is a great reply...lifted my spirits already and helpful. I said no thanks to the anti depressants but wanted to check out if I was a bit hasty...this thing gets me second guessing a lot.

How hard was that getting OA so quickly? Such a bummer for you. Thanks for telling me though as it has reinforced my thinking that it is ok to get the xrays just to check. Worse case scenario they say everything fine which is actually the best case scenario. I had feet xrays about 6 months ago and it was all fine but now I have two split- pea size hard lumps on the top of my problematic slightly bent psa second toes..maybe cysts but very very hard ones ..???

The info about DMARDS is very helpful. I have been working on the 3 months plus one month just in case but now that I am past that I find myself wishing someone tells me the magic happens at 6 months....I just dread going to rheumatologist and having to say it only helped 5% . In Australia the protocol is that you have to have tried and failed at two DMARDs, I have already failed at sulfasalazine so theoretically I should be eligible but senior specialist has to recommend...

Thanks again for sharing your thoughts....I would like to see a bag of frogs :-)
Sybil said:

I suppose what I think is pretty simple really. And that is, if you've got PsA you need PsA drugs to sort it. And with PsA drugs, trial and error / wait and see are the order of the day. However, 3 months is the time period that I've heard time and again for DMARDs from rheumatologists and others with PsA. Then add another month just in case. I would not be happy taking Arava for 6 months while actually getting worse and randomly topping up with anti-depressants. In fact I'd be mad as a bag of frogs.

I'd prefer physio to steroids but they have different purposes. Movement's ongoing and essential .... whatever movement is possible and needed. But steroids have their place in a crisis and while waiting for more sustainable drugs to work. I'm not sure it's a case of 'either or'.

I got secondary arthritis of both knees during a severe flare within 2 and a half months, which was the time between x-rays. The joints were extremely swollen and oa was helped along by muscle wasting as I couldn't walk for much of that time. Secondary oa is one of the things that can happen to joints that PsA is going for. I don't know if there are any guidelines for how quickly joint damage can occur, but I do know that caution is required.

I kind of wonder why you're mentioning remission ... I like your style! But the first thing is to improve, maybe even gradually! And that would not seem to be happening on Arava, quite the opposite.

So, what are the treatment protocols in Australia? Is it the old 'try 2 DMARDs then be considered for biologics if they haven't worked'? In your shoes I'd be wanting that second DMARD pronto. Or to be fast-tracked to biologics. What are the options?

Oh, and I just don't know about anti-depressants. Maybe they would give you a lift. But to me that sounds like fiddling while Rome burns.

4

The oa is a weird one. DMARDs did help me, they just didn't help enough. But increased mobility bred increased mobility .... then, just when I thought things were good but wouldn't get any better, Humira got the swelling down and now, finally, I'm in the advanced class: doing things like learning to kneel on the floor again, crouch down etc.

I'm wondering, why do you dread telling the rheumy DMARDs haven't helped? On one level I understand that, but it's living with PsA that's not improving that's the really dreadful thing. You've not failed! What might be a bit challenging is getting things moving in the direction you want them to go and keeping them moving. You sound like a confident person but being assertive, being our own advocates, pushing for effective treatment and keeping up the momentum are quite daunting to contemplate. But we'll support you as best we can, whatever you decide to do.

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I’m also noticing that you are not on a full dose of Arava. Is this because of the GI effects? Arava has worked really well for me, but MTX was the med that I was on for six months of misery and no improvement.

Tendinitis can be really challenging. I’ve had some luck with physical therapy so this ,Ishtar be an option to address that specifically. But yes, it is sounding like this med may not be a good match for you. I should mention though, many rheumys like to keep people on a dmard while on a biologic. This is something that you should ask your doctor about.

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Thanks Stoney thats helpful info. After starting this thread today I contacted rheumy for earlier appt. I am on a cancelation list. But after your and Sybil's comments I plan to phone tomorrow or email and see what can happen. He might want me to increase dose...that will be very short lived I think because of SE. I will definitely book physio too. It seems like in UK physio is more part of the standard care plan, whereas here it is more marginal.

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If we gave gold stars, I'd give Sybil one for her post! And a silver one to Stoney for her attention-to-detail. Yes, I'm with them.

I don't see any big dilemmas here, MacMac. I see a DMARD that isn't cutting it. I agree with Sybil about 3 months, with a fourth to be sure, but I can't imagine a miracle moment happening suddenly after six months. I'd vote for a change of strategy, and it sounds like you're heading in that direction.

Physio, steroid shots, and anti-depressants are all attempts at pain control, and that has nothing to do with disease control. In my book, you aim for disease control and then treat whatever pain you have with whatever works. ADs can work well, but they can also have unpleasant side effects, as you mention. If that happens, you flush them.

How fast can damage happen? Depends on how aggressive your disease is. And severity of pain is not a reliable guide to how bad your disease is. I do believe I'd be asking for the x-rays after two years. The results of those will inform your treatment decisions.

Look after yourself, and keep asking questions of your docs until they come up with a treatment plan that has you saying "Yes, that makes sense and I'm comfortable with that."

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Thanks everyone. I was feeling uncertain yesterday but much clearer after these comments.

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Thanks everyone for the support. I have moved through the low I was in this week and into determined advocate mode thanks to friends, loved ones and this site :-)

Thought you might like to know I have contacted the rheumy who has told me to stop the arava because of side effects. I have an appointment to see him in 5 weeks and they will get me in sooner if they can. I am going to advocate for biologics as I have done 2 DMARDS and don't feel like trying a 3rd especially given the side effects of the other two. I have also booked steriod shots, ultra sounds, xrays and physio...all very important as I enter this next 'gap' till the next step is sorted. Thanks

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I love "determined advocate mode" MacMac. Sometimes we have to spend quite a bit of time there but once we've found it the first time then it's easier to summon in the future when needed. I hope you get through this 'gap' without too much problem .... my worst 'gap' was between stopping Arava and starting biologics. Keep us posted.

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Great to hear the support from this site has got you in advocate mode :slight_smile:

The Australian system can be challenging to navigate if the standard dmards don’t work sufficiently - be persistent, and if you get exasperated, feel free to ask :slight_smile:

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Thanks Jen and Jules G. I agree Jules, advocating for ourselves imoroves with practice....generous of the universe to provide so much opportunity to practice lol :-)

And thanks Jen for the offer re local Aust. knowledge...will keep it in mind.

Cheers

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Hi all, Busy week ahead. Working and then I am off for steriod injections in both sacroiliac joints on Thurs and rheumy appointment this Friday. Had injections into hip a couple of weeks ago. Since stopping arava I have realised it was probably helping more then I thought. I hope I dont stay in the gap too long. I have also been off NSAIDs for 7 days which has been hard going.

Awake again after little sleep and trying to prepare for rheumy appt. I am going to advocate for a biologic trial. I suspect my PsA is at a turning point and I have decided to push for something else before significant joint damage. I worry that I don't easily fit the Australian guidelines which seem very strict. If I dont succeed then will go on Mtx.

Two questions that I was looking for help on:

1. The guidelines define 'active joints' as swollen and tender: sometimes my tenderness is much much worse then swelling. Anyway does anyone know if the dr has to observe this themselves or does patient report help? Maybe this question can't be answered but any ideas or comments will be helpful

2. Any Australian members especially, is there anything you can let me know that might be useful in arguing my case? Especially re joint count and bloods?

Thanks

MacMac

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Good luck MacMac, we'll all be rooting for you!

I'm in the UK (which isn't much help, I know) and I had two physical exams some weeks apart prior to applying for biologics. The first examination was done by the biologics nurse who found swollen joints right left and centre. I thought I had 4 or 5, she found at least 10. I think it was 6 weeks later that my rheumy did the second exam. He wasn't quite as eagle-eyed as the nurse had been but still found a fair few that I'd thought were okay. Basically if they press a joint that is even half-way dodgy then squeak, loudly!

Oh lordy, I've just looked up 'rooting' to see if I'd spelled it right and saw what it means in Australia. I hope you know what I mean!

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MacMac, the joint count is as done by the rheumatologist, on a specific set of joints of the fingers and toes. The assumption is that what happens there is reflective of what PsA is doing to your whole body. Works fine until your disease decides to pick on things like midfeet, knees, hips, shoulders, etc instead of your fingers. None of those joints (normally) count in the count.

The person who can really fill you in, because she’s in Oz and “been there, done that” is becstar. Drop her a PM, or even better, ask her to post on this thread.

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Those bits and pieces do count for PsA in the UK, here's hoping it is the same in Oz. Or was it Australian protocols you were referring to Seenie?

Oh and here we do have patient self-assessment .... the how bad is it from 1 - 10 thing. I thought I'd seen the Australian system outlined here some time back ....

Seenie said:

MacMac, the joint count is as done by the rheumatologist, on a specific set of joints of the fingers and toes. The assumption is that what happens there is reflective of what PsA is doing to your whole body. Works fine until your disease decides to pick on things like midfeet, knees, hips, shoulders, etc instead of your fingers. None of those joints (normally) count in the count.

The person who can really fill you in, because she's in Oz and "been there, done that" is becstar. Drop her a PM, or even better, ask her to post on this thread.
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If that’s the case, that is great! I am referring to the DAS scores, which I assumed were the internationalyardstick that rheums use to judge disease severity.

Somewhere, I remember seeing the Australian requirements for starting a bio. But where?

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Ha Sybil, thought I might have been in a different kind of chat room when I read your post :-)

It's ok both meanings of the word are used here....makes for some interesting moments.

Thanks To you and Seenie, that's helpful. In Aust there are two joint counts for assessing biologics for PsA, 20 joints including hands, feet, knees and axial or 4 large joints from hips, shoulders, elbows, wrist, knees, ankles. My problem is often not pronounced swelling.

Sad face as rheumy has postponed appointment and offered me an appt for 21st Dec. Feeling pretty annoyed and plan to change soon. I will have to drive about 750 kms to come back from a family event in the country to make the appointment or otherwise wait till February....will practice my squeak on the drive I think :-)

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Mac, The Australian protocols can be found with much (not easy to find) googling - see;

http://www.humanservices.gov.au/spw/health-professionals/forms/resources/pb105-1504en.pdf

From your description, there are two significant hurdles before you move to the possibility of biologics - first that MTX is considered first line of defense in Aus, and you must fail this to apply for a biologic. So according to the form you have 3 months of MTX from the date you can get it prescribed (best case scenario it actually works - which it does for some - it was certainly better than nothing for me).

Occasionally regional GPs will prescribe it, particularly if the Rhuematologist concurs via fax or email, without an appointment with the Rheumy. If you have a good relationship with your GP and think this is a possibility to speed things up (like at an appointment tomorrow), it might be worth trying.

Then, the next will be the ESR and CRP. Do you have high ESR and / or CRP as specified by the form?

I didn’t (as nearly half of us do not), but as I had been taking chronic systemic steroids (depends on your Rhuemy’s definition - could be a month, could be three, mine was nine), the Rhuematologist put that in the box “if the above requirement to demonstrate an elevated ESR or CRP cannot be met, state the reason why”.

My Rheumatologist really did not want to prescribe me biologics (really - most of my appointments for the first two years were about 1 minute about me, and 29 about how he had just visited someone in hospital with pneumonia / cancer / insert scary disease here who he’d prescribed them to) . But once it became clear nothing else was going to make me functional, and I advocated strongly, the swollen / tender joints he took at my word (despite not being able to wear rings, having visible indents on my bra straps etc, he said he could never see swelling), whilst of course doing all the required clinical examinations, so unless your Rhuemy is determined not to prescribe them to you, that part should be fine.

I do hope you get out of that gap soon!

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Just curious have you tried photo logging the swollen joints? I have done this many times because I often find when I see my rheumy (especially for new developments or concerns,) they are less pronounced by the time of appointment. I know we are more lax here in USA on treatments but this really helped me fast track to a biologic even after my DMARDs one was stopped in just two doses for allergic reaction and it was counted.