New at this, on naproxan at present and will be begging for Methotrexate in April. My main trigger seems to be any physical activity. Good excuse to get out of cleaning the house, but I'm over having my life restricted to much more then the lounge. If I try doing short walks on the flat I suffer the next day. But it is not just the joint the joint that I used that it is inflamed. It seems that any exercise has a more systemic effect with all 4 limbs aching and that fatigue. So is this "allergic to work" what the rest of you suffer. Will the Methotrexate settle that?
Hello Newt. I think what you're describing sounds fairly typical for a flare. I've only ever had one really big flare up and to be honest I would have been hard put to identify cause and effect at the time, it was more a case of everything hurt, everything was wrong, nothing helped. Perhaps if that happened again I'd be able to read my body better, I'm not sure, but I would try to keep moving .....
I think when things calm down a little you may find that gentle to moderate physical activity relieves pain and indeed fatigue in a much more obvious and straightforward way. But meanwhile if you take to the sofa and stay there you are likely to get more tired, stiffer still and potentially to have even more pain. When things were really bad for me I also got some muscle wasting which I think has contributed to secondary osteoarthritis in my knees. That can happen all too quickly.
How about doing something relatively gentle every single day at the same time? That way it would be easier to judge whether it gets easier over time, whether it does start to help and so on. When I eventually got my act together I bought a second-hand exercise bike and positioned it in front of the TV. And I religiously put in the 5 tedious minutes daily, building up to 10 minutes, then 15 and so on. I survived the boredom and that was a real turning point. If moving at all is getting seriously problematic then why not seek a physio referral for advice?
Methotrexate has alway helped me considerably .... not quite enough but it was certainly a huge improvement on the Naproxen days. If you want any tips for your upcoming appointment just give us a shout here because we'll all be rooting for you, starting proper treatment is so important. Good luck.
Hi Newt
What Sybil says is spot on.
I know that a walk every day really helps me.Just start slowly,but persevere.Methotrexate has helped me tremendously too,so there are plenty of options for us all.Hope you feel better soon.
Hi Newt, I think I had something similar before I started Enbrel. Mild exercise or just plain movement was better for me than sitting or laying around, which was even more painful. But I get what you're saying, and you need to be really careful about how much exercise you get. Any amount will keep down the stiffness, but unfortunately just a little too much exertion can increase the soreness and fatigue. It's hard, I know, to find the best fix. When it got unbearable for me I went on Enbrel. Now the amount of stiffness and pain I have is much more bearable. Especially because I don't have the fatigue and weakness anymore!
I never tried methotrexate, so I can't answer that question, but if and when you start a biologic I hope you have the good results like I had!
Ditto all the above. My doc wouldn’t listen to my concerns about these issues. I’ve got osteo as well and I was told point blank I did not have an inflammatory arthritis. Had both knees replaced, still got excruciating leg pains. Got heel spurs, Achillies tendonitis but everyone said not linked to arthritis. In 3 years I’ve gone from an " oh great new knees , new life" to a cant be bothered,knackered , comfort eating " sorry guys leave me here to sit and pick me up on the way back " old woman. Only got my diagnosis this week and I’m already prepared to walk over fire for my rheumatologist. I’m only on a steroid for two weeks trial, MRI next week. But the steroid is lightening my mood. Pain still there cos of course it can’t be cured but my sense of well being is improving just knowing I hadn’t just got lazy. Don’t feel guilty, just stick out for the meds, try anything that improves your life x
Phoned and got an early appointment tomorrow to see Rheumo. I do feel that you may be right, this is a flare. Before it was more like 20 sore joints, now it is more generalised aches of whole limbs. No awards for heroes. Thanks for your advise.
Newt
This term 'flare' basically means 'things are worse than usual' as far as I can tell! Before starting meds (and while waiting for them to kick in) I was in the sort of state that you describe for what seemed like an age. Whether it would have calmed down somewhat on its own I'll never know. 20 sore joints is a lot but maybe best to see your rheumy with all PsA flags flying than while having a reprieve! I recall deep aches in my long bones too. And probably in some short ones.
The very best of luck tomorrow, you are right not to be thinking like a hero .... let your rheumy know exactly how your symptoms affect you, not only the pain but all the activities, big or small that are at all difficult at the moment. Apparently rheumys take notice of 'function' being affected more than of talk of pain. Better days ahead eh? Please let us know how it goes if you get time.
Newt said:
Phoned and got an early appointment tomorrow to see Rheumo. I do feel that you may be right, this is a flare. Before it was more like 20 sore joints, now it is more generalised aches of whole limbs. No awards for heroes. Thanks for your advise.
Newt
Newt, I was convinced I had just got incredibly lazy as well. When I got on the right treatment, the "old" (or rather, "younger") me returned. Whether methotrexate will do it for you? Who knows. There's nothing that is guaranteed to do the trick, it's all trial and error. But when you get the right treatment, you will probably find your "allergy" improves.
Gosh, Phillylou, same same same here. Concerns dismissed. Two new knees. Incredibly painful legs (especially at night, in bed), feet I could hardly walk on. Oh, I asked, but no, it couldn't be anything else except osteo, your blood work is fine. And of course, in my head it was all my own fault: I was lazy, not exercising enough, not eating as well as I should (yes, comfort eating too), just getting old.
Here's a blog post you may be able to relate to.
Phillylou said:
Ditto all the above. My doc wouldn't listen to my concerns about these issues. I've got osteo as well and I was told point blank I did not have an inflammatory arthritis. Had both knees replaced, still got excruciating leg pains. Got heel spurs, Achillies tendonitis but everyone said not linked to arthritis. In 3 years I've gone from an " oh great new knees , new life" to a cant be bothered,knackered , comfort eating " sorry guys leave me here to sit and pick me up on the way back " old woman. Only got my diagnosis this week and I'm already prepared to walk over fire for my rheumatologist. I'm only on a steroid for two weeks trial, MRI next week. But the steroid is lightening my mood. Pain still there cos of course it can't be cured but my sense of well being is improving just knowing I hadn't just got lazy. Don't feel guilty, just stick out for the meds, try anything that improves your life x
I stopped asking about my foot pain too. It hurt for years as did my hips. I ignored and now I am in a flare that won't stop. I am still in the gap with meds and am still trying to be patient. It is not always easy. I blame myself sometimes because I hurt in my foot for years and now I can't walk I should have tried harder to get someone to figure out what was wrong.
Seenie said:
Newt, I was convinced I had just got incredibly lazy as well. When I got on the right treatment, the "old" (or rather, "younger") me returned. Whether methotrexate will do it for you? Who knows. There's nothing that is guaranteed to do the trick, it's all trial and error. But when you get the right treatment, you will probably find your "allergy" improves.
Gosh, Phillylou, same same same here. Concerns dismissed. Two new knees. Incredibly painful legs (especially at night, in bed), feet I could hardly walk on. Oh, I asked, but no, it couldn't be anything else except osteo, your blood work is fine. And of course, in my head it was all my own fault: I was lazy, not exercising enough, not eating as well as I should (yes, comfort eating too), just getting old.
Here's a blog post you may be able to relate to.
Phillylou said:Ditto all the above. My doc wouldn't listen to my concerns about these issues. I've got osteo as well and I was told point blank I did not have an inflammatory arthritis. Had both knees replaced, still got excruciating leg pains. Got heel spurs, Achillies tendonitis but everyone said not linked to arthritis. In 3 years I've gone from an " oh great new knees , new life" to a cant be bothered,knackered , comfort eating " sorry guys leave me here to sit and pick me up on the way back " old woman. Only got my diagnosis this week and I'm already prepared to walk over fire for my rheumatologist. I'm only on a steroid for two weeks trial, MRI next week. But the steroid is lightening my mood. Pain still there cos of course it can't be cured but my sense of well being is improving just knowing I hadn't just got lazy. Don't feel guilty, just stick out for the meds, try anything that improves your life x
Thanks all for making me feel normal.
Saw my Doc today who wants more evidence. I had Guttate Psoriasis for 7 months last year, triggered by my medications. No other history of psoriasis, at its worst it covered 1/3 of my body. In the past 6 months I have a completely torn ligament in my foot, a partial tear and tendonopathy of my achilles, synovitis and tendonopathy in a ankle ligament and 2 knee ligaments with tendonopathy. All shown on MRI of one knee and USS of one ankle. Then there is the clinical history of everything else. Now he wants more evidence before he considers MTX. So I am off for an MRI of one foot and one hand, and review in 6 weeks. So how many ticks do I need before he takes this seriously?
Oh no. I'm trying to see it from all angles ...... the doctor has to be sure before prescribing a drug like Mtx .... but you must be feeling so frustrated.
That rheumy isn't penny-pinching though, is he? Or he wouldn't be going down the MRI route .... or does your insurance cover that? To me the most positive thing is that he wants to see you in 6 weeks, way too long from your point of view, but actually quite quick in terms of hospital appointments. So he is on the case .... still a bit gutted for you but this could turn out good.
Newt said:
Thanks all for making me feel normal.
Saw my Doc today who wants more evidence. I had Guttate Psoriasis for 7 months last year, triggered by my medications. No other history of psoriasis, at its worst it covered 1/3 of my body. In the past 6 months I have a completely torn ligament in my foot, a partial tear and tendonopathy of my achilles, synovitis and tendonopathy in a ankle ligament and 2 knee ligaments with tendonopathy. All shown on MRI of one knee and USS of one ankle. Then there is the clinical history of everything else. Now he wants more evidence before he considers MTX. So I am off for an MRI of one foot and one hand, and review in 6 weeks. So how many ticks do I need before he takes this seriously?
OK, Newt. I must be a bit dim. I read your profile, and your rheumatologist tells you to come here. So he thinks that you have PsA. You have an MRI showing tendonopathy, and you have a history of ligament problems in feet, and a clinical history. Now he wants more evidence. Evidence of what, and for what? Of PsA? A reason to justify starting MTX?
This is interesting (as if you want interesting …), and we’ve seen this kind of reluctance to treat before. One of our other members in Australia, Becstar, comes to mind. Check out her profile and story!
I am seeing him privately and my MRIs are Bulk Billed. I am fully insured. Its not a money thing from either of us. He changed my antinflam from Naproxen to Celebrex. He said that the Celebrex could take that long to fully work. The only thing he said to indicate the hesitation to start MTX was that I was on so many other drugs already for other medical problems. I understand the problems with polypharmacy. This whole thing started as a drug reaction. I know that a medication I am currently is regularly monitored for liver damage and MTX will add to my risk. So are flares self limited, how long do they usually last. Has anyone had more relief with Celebrex.
His caution does look justified. However, as Seenie says, other Australians here have reported difficulty 'qualifying' for biologics and from my limited knowledge it looks like a biologic might just fit the bill for you because although hopefully Celebrex will help with pain it won't protect against the disease. You could bite the bullet and ask him straight about the biologic option. I don't know if anyone will be able to suggest how long a flare might last ... I guess long flare-ups could be seen as yet another indication that disease modifying treatment is required. Is a steroid jab a possibility to tide you over? They're given fairly routinely in the UK though not so much in the US. I'm not sure about Australia.
Great to hear that insurance etc. is not a problem.
Newt said:
I am seeing him privately and my MRIs are Bulk Billed. I am fully insured. Its not a money thing from either of us. He changed my antinflam from Naproxen to Celebrex. He said that the Celebrex could take that long to fully work. The only thing he said to indicate the hesitation to start MTX was that I was on so many other drugs already for other medical problems. I understand the problems with polypharmacy. This whole thing started as a drug reaction. I know that a medication I am currently is regularly monitored for liver damage and MTX will add to my risk. So are flares self limited, how long do they usually last. Has anyone had more relief with Celebrex.