thanks jen i should jut make an appt. i feel like when i call it will be 2-3 weeks away anyway so just make the appointment…
Hi Rich
Yes, I had the same feelings from time to time that started after I hit 5 weeks on sulfa, 2g per day. Also started with mild nausea and a general feeling of being unwell. Called my doc and he seemed pretty confident it was a drug side effect mostly. I find that if I don’t get enough sleep it is much worse for me. Also have noticed that sugar will set it off. Also had the itchy red eyes.
So just this week during my appt with doc, we started Enbrel and dropped the sulfa. Note that he had previously tested me for TB, hepatitis, and we also did a baseline lung x-ray along with hands and pelvis.
But because of the eye redness and some increasing skin irritation he pulled the trigger on the biologic. And I know it’s only been a couple of days but I feel an easiness throughout my body that hasn’t been there for months. I also am having less pain and the fatigue and fog have lifted! Stay positive, you will find what works.
So like the others are saying, call your doc and describe any new symptoms no matter how obscure or minor they might seem.
My doc was very concerned about the eye involvement and could see how red mine had become. I almost didn’t mention it but glad I did.
Rich, I had a sort weird reaction when starting sulfasalazine. I called it being more noise sensitive than I usually am. However reading your better description, I can relate to much of what you said. My guess is that it’s your body getting used to it. And if it’s any consolation, such issues for me truly didn’t last and instead the drug worked too.
But like everyone said, tell your doctor and keep a diary of such symptoms day to day. That way when you get to your appointment, it’s easier to see the whole spectrum of them or not as the case may be.
The fact is that everyone reacts differently. And the science can’t tell us yet which of us will react better to any of the meds, or indeed which of us might have such bad side effects it’s pointless and/or dangerous to keep taking the drug. So sadly it is a case of just suck it and see as if you don’t try, you won’t know. And if you don’t try then you won’t find the one that really works for you. And when you get one that works, you really know it does and that’s so much better.
And if helps, I too found that just so frustrating when starting out too. But once I got my head around just that, a lot of the angst also just went away. It’s a serious and debilitating disease and feeling its full force on my capacity levels also helped me to understand better too.
For me whilst it worked sulfasalazine was a lovely drug. It didn’t make me have to change my lifestyle much at all and all those initial side effects went away and I felt just great frankly. I so hope that happens for you too.
I experienced a very similar thing, dizziness etc but it felt like it was building over a week and getting worse.i stopped taking which I think I regret because this was early on and I didn’t fully appreciate start up side effects often wear off.
lets hope… i selpt awful last night and feel more typical of a bad nights sleep/some minor symptoms but nothing like the other day. this little thread will help me keep a record and i will update
Headaches tonight. Not awful 3/10 in severity. I’ll live
Slept poor last night
Let’s hope tonight is better
I greatly sympathize with the emotional turmoil you are enduring as a newly-diagnosed PsA patient. You know your own wife, but is it really best to wait to tell her about the PsA after the baby is born? In most families, the few months after the birth of a new child are more stressful than those during the pregnancy. I hope you’ll consider telling her a little about your illness now (without working it up) rather than shocking her with the withheld news later on. NancyJ
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I would say that, yes, it is quite possible that you have had PsA for a long time. I had my first symptom in my late 20s, inflammation of the iris. It is one of the hallmarks of this class of diseases. But, I didn’t get a correct diagnosis for 37 years. I suffered with fatigue and pain for decades. I dealt with it just by pushing myself and over-using NSAIDs. I didn’t know then how dangerous they are.
I couldn’t find the second question that I wanted to reply to, but I hope you are able to sleep well tonight and that you find some relief from the worry that is besetting you at the moment. I think your anxiety will settle down as you learn more.
I was very scared to try a biologic. I was already on methotrexate. But, reading some of the posts here about beginning biologics and about fear of them helped a lot. So, keep reading and keep sharing your thoughts.
I would also recommend talking with your wife. Does she know you worry (and maybe catastrophize)? If she doesn’t, it will be difficult for her to interpret your non-verbals, how you behave, or that you seem preoccupied. When I used to catastrophize, my husband usually said, “What’s the worst that can happen?” I’ve used that line with him, too. It often brought us to our senses, back from very wild thoughts.
Having also been diagnosed with breast cancer, I know fear in the face of a diagnosis. I also recommend that if fear arises, don’t stay there, letting the thoughts proliferate. Every time that happened to me I turned my attention to my feet. Just felt my feet. It’s worth a try.
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There is a lot of mindfulness garble out there. This, from Laura, is, at its essence, the way it works for me.
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How many days or weeks since you started the sulfasalazine?
One of the other things I was too slow to do was to see my doctor and get tramadol which helped alot
I’m on week 2 of the sulfa. 2 500 pills morning and night. Only had that one awful day so far and had one great day the rest in between. I noticed yesterday my hand was really kinda messed up (for me) as I have been taking less duexis so I really hope the sulfa does work in 2 months at getting the pain and stiffness under control. I don’t really care about any of the other stuff, I need to be able to use my hands at 95 percent of what it used to. Otherwise I really will be crushed.
Love the ‘garble’ notion. So true. Please don’t think the ‘garble’ stuff is reality as it’s not. At all.Having an incurable chronic condition isn’t capable of needing any ‘garble’ at all. In fact all that ‘garble’ does is confuse.
Always ‘care’ about the other stuff. I thought I didn’t need to either, but now I know I do.
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Not much to reply although the past few days have had high levels of hand and finger pain as I have not been taking duexis. Today had the warm/dizzying/lethargic feeling of last week but at about 1/2 the intensity so it was manageable. I felt quasi human at least
Also I went to the gym Saturday and Sunday and am still really beat up. Knees kill and ache and muscles are taking extra long to recover. Lots of tightness
You might think about doing a gym-lite routine. Whatever you usually do, try it slower and less energetically. That way you might find a level of activity that gives you the benefits but not such a big knock-back. It’s really good that you exercise though.
Feeling quasi-human was the thing that most inclined me to embrace the drugs. Many people assume that taking medication will result in feeling like a zombie but for me it was PsA that had that effect and effective treatment has reversed it, on the whole.
That. Multiplied by 100. The only slight zombie effects I ever had were from MTX, which wore off after a couple of months as my body adjusted to it. Anything that had no effect on the PSA (including Sulfa) had no effect on the “zombie” I felt I’d turned into. Anything that had a positive effect for me (and for me it seems to be either on or off - either no effect or a huge positive one), also changed me from feeling like a zombie with PSA, to clear headed again and though not always pain free, feeling like ME again.
PS. Whilst my PSA was not under control, I changed my gym goals entirely. Instead of reps and weights, my goal became just to get there every week. I did it, for nearly two years, I just went, never making headway, and that kept up the habit, so it was still there when I found my first med that worked (Enbrel). I slowly started to improve. I went from thinking I’d never ride a horse again (my quiet passion), to today, riding an awesome dressage trot, no stirrups, with that beautiful curve in the horses neck you see on TV, and the feeling of connection is something I can’t describe. It took time, work, and the right meds, but I feel blessed, even with the bad days.
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Hi Rich
Exercise is awesome but definitely go easy. I did the same thing before I was diagnosed thinking I’d workout the stiffness and just ended up straining some tendons and attachment points in shoulders and elbows. After 4 months, they are still tender and weak but slowly coming around.
Rob
Yes sounds familiar. Can’t believe this is all happening.