Keep on Trucking

Just back from rheumy appointment. Not too much going on - my rheumy reckons I'm pretty close to 'remission' though seems to define that hallowed state as a very low level of disease activity. That will do nicely though! This is all due to Humira.

My current woes, though little ones, are mostly down to enthesitis. And my hip pain is trochanteric bursitis for which I can have a steroid injection if it gets too much. As my ALT has stayed up despite reducing Mtx to 7.5 mg, it's farewell Mtx unless I want regular liver biopsies, which I most certainly do not. And if I flare without it, there will be a re-think.

What I really like about this rheumy is that everything he says tallies with what I've learned, mainly from this site, and my own experience of the disease. Consequently I don't end up feeling as if I'm inhabiting a parallel universe.

The minute I entered the room he commenced a lecture on the importance of exercise. Nothing I said to the effect that he was preaching to the converted could stop him. But I like the fact he pressed on with it, it means he's not just endorsing the things I'm doing to help myself, he obviously feels very strongly that it is a fundamentally important factor in handling this disease.

The worst thing PsA has done to me so far is to cause rapid OA in various places especially knees and feet. And what my rheumy had to say about how exercise helps this struck me as particularly clear and useful. He said that often it's not the extent of damage that necessitates joint replacement as the degree of pain. A person can have fairly minimal damage that is very painful. Some, like me, have pretty bad joints but little pain and good mobility. And he said that while exercise won't slow down the progression of the OA, it is a major factor in keeping joints mobile and limiting pain. Eventually he conceded that I'm doing a damn good job on that score. I needed to hear that!

Life without Mtx eh? That means no more prescription charges and maybe, just maybe, I'll have a wee dram of whisky next Friday night to celebrate the way things are going. I want everyone to get where I am now and ideally without the damage of course so I'm flying the flag for biologics sooner rather than later. I know it's not aways possible to be this well, but it does happen.

I am glad you are doing better; I know you have been suffering for a long time now! Overall, I know mobility is key factor in management of my pain as long as it is light and low impact on my joints with PsA. A couple of my doctors want me to try to get back into the gym, but honestly I am not taking the risk – I have extensive experience with weight lifting and working out in general (10 years of being a gym rat). Sharp pain or the fact that I drop things when exercising means stop.
I am to and advocate for effective treatment early (whatever drug helps). I am also an advocate for keeping using the drug even with remission for as long as safely possible.

Well, I am glad you are feeling better! One final word, I know there are some drugs out there that may help with the OA leftover from this disease in specific locations (the hands). There was a study on Plaquenil and OA in the hands. Not sure the results in that study, just a suggestion to look into. Maybe TNT can give more light on that study.

He does sound like a wise doctor. I’m glad you’re feeling better! I am back on the Humira after being sick, and am quite hopeful. :slight_smile:

Finding the right balance with exercise is incredibly difficult! I have a nasty combination of inflammatory arthritis and damage from injuries to my mid back, which complicates my exercise routine a great deal. I too believe that if it’s super painful, the exercise is too much. That’s not including stiffness though, and I think that the pain of getting the stiff joints stretched out can scare people off from exercise sometimes… at least it did for me at first!

Definitely. I am grateful for the information here- it’s made the whole process much less of a mystery.

Hi Sybil! I think it sounds like you're doing pretty well! Minus the OA you'd be perfect! I have to tell a funny story. My dad had celiac disease and my mom would critique his bm's, I kid you not! My mom has been hard of hearing for quite a few years now, and not long before daddy died he said of her (after she was nagging about his loose, noxious stools) "if her hearing was as good as her sight and smell, she'd be perfect! She doesn't hear anything I say, but she never misses when I go to the toilet!"

Sybil, judging from your high pain tolerance, I'm pretty sure that it was best to not overdo it when your joints said no. Pain is telling us to stop or change how we do things. My physical therapist has told me with my back to only do my exercises if they feel comfortable, and stop when it hurts. Absolutely no lifting. A little bit of hurt is OK, but when pain continues to increase from the exercise or movement, that's your body's way of shouting "give me a break!" With OA, isn't that a build up of calcium deposits? I don't think it would go away without surgery, but I'm no expert on this. The joint at the base of my left thumb is huge with OA, but since being on Enbrel the inflammation that was also in it has subsided, so it isn't as painful. I move it more now than I could when it was at its worst, but it hurts a little at times and then I use caution until it relaxes. Same with your knees and hips, I guess. I'd baby them a little when the pain increases to slow down the deterioration and delay any possibility of surgery--but that's me. I think you're quite attuned to your body and you seem to be doing really well. Although you're not a complainer so we may not know how bad it really is! :-) I do agree exercise is good--just what's good for each of our situations is definitely different. You seem to be a real toughie!

Thank you so much for your post. Even though you have other things to deal with you are in remission! Wow!! I am sitting in bed enjoying a temporary break from the methodextrate induced migraine feeling hopelessly sorry for myself and I read your post and started to cry not from pain but happy tears that its possible and you took the the time to share it. Have that drink and celebrate sounds like you deserve it and thank you!

So great to hear that things are going well for you.

I love hearing good news! You've been through a lot, and this amount of disease control is amazing.

Hi Sybil,

Great to know that you are feeling and getting much better!!!

I'm with you about the importance of exercise. The thing is, I had become pretty much immobile in the last couple of months. Before my first flare in May, I used to do a 1.5 hour yoga routine every day (I know yoga isn't much of a "sport" but it was an exercise that made me happy :). After May my exercise routine became irregular, and after November getting out of bed to go to the toilet was an issue! So I wanted to start exercising again, but I was afraid and didn't know how to start. I have experience with muscle pain and I know where/when to stop, but I was scared that I would misinterpret the signals of my body and hurt my joints more. But today, I took a deep breath and went to yoga with my mom anyway! At this point I must add that after my last flare a couple weeks ago, which was pretty bad, I didn't stop taking my antiinflammatory medicine after the pain stopped, and my mom suggested I keep on taking them for a while, so my body might "forget" the inflammation. And I think this is the first time my inflammation levels are actually down (maybe even gone?) for the first time since November. I still have some pain in my SI, and some pain at my ankles and my wrist, but much more tolerable. And the fatigue is gone too.

Anyway, I went to yoga, I was quite scared, and it all went well. Of course, I had a hard time on balancing myself standing on one foot (right one was hard, left was quite impossible). But I didn't have the amount of pain I was afraid of, and some of the later moves actually felt good. I felt my SI relaxing. I have a little pain right now, but nothing alarming. I think this might be good for me. I will go again on Wednesday. And right now I'm proud of myself for just getting out of bed and doing something good for my body! I wanted to say that when I read your comments on exercise and perseverance (I hope I will be able to persevere).

Yes! Keep on keeping on! You are an inspiration Sybil. So glad you're doing better and so well. I am amazed at how far you can walk. (Just was reading a blog of yours the other day.)

Brilliant to hear that you are seeing this consistent improvement and that the docs feel positive about it for you. Enjoy that wee dram.

So good to read this, Sybil! It just goes to show what good teamwork can do – a doc who is aggressive with treatment, and a patient who takes self-care seriously. Three cheers for both of you! I am so glad (again) that you took the troublee to do what you did to get to his doorstep.

About exercise: I think you’ve got it about right. I doubt that the good doc was talking about physical punishment-type exercise, but rather the kinder, gentler sort: walking, swimming, yoga, cycling etc.

Such a good news post. I’ll raise a glass to you then!


PS I’m so inspired by this that I’m thinking of re-naming my moblity scooter. She used to be called Daphne. I’m seriously considering dubbing her “Sybil”. Nice ring to it, don’t you think? Sybil the scooter. Or is it like boats – renaming is bad luck?

Sybil, good news. I'll sip a wee dram with you!

And Seenie, i think it's fine to rename the scooter as long as you crack a new bottle over her from bumper!

PS I'm so inspired by this that I'm thinking of re-naming my moblity scooter. She used to be called Daphne. I'm seriously considering dubbing her "Sybil". Nice ring to it, don't you think? Sybil the scooter. Or is it like boats -- renaming is bad luck?

OK, jane, that’s all the encouragement I need! LOL

Congratulations- may it be long-lasting. Life without methotrexate, it's everyone's dream!

Hi Sybil,

Well, I'm limping juuust a little bit tonight, but I think it's primarily caused by muscle spasms and not the joint itself. I was immobile for such a long time, it's quite natural that especially the muscles around my back and hips became sensitive and weak. Anyway, I will keep on pushing :) I will definitely go again tomorrow.

Anyway, once again, I'm really happy that you are better :) And I hope that you can beat this disease completely, you have come this far after all :)