I saw my new Rheumatologist this week for the third time. I feel very lucky to have him as my Dr. It seems we're finally piecing this puzzle together.
To be succinct, he thinks I could have Ankylosing Spondylitis in addition to my PsA. I still have to get an MRI and some bloodwork done, but that's how things look. The pain in my back, limbs and extreme fatigue now make sense. He changed my NSAID from Celebrex to Meloxicam; he also gave me a couple dozen samples of Tramadol 200mg for the days when the pain gets too much. Both of these meds are helping, I can already feel the effects. I am still maintaining my weekly Methotrexate along with the folic acid and Plaquenil.
Is anyone here also dealing with both of these conditions? How do you manage the pain and extreme fatigue that hits regularly? Not sure what medication(s) my Dr has in mind once/if he makes a final diagnosis. I also have Raynaud's and possibly Sjogren's.
about 20% of PsA folks have AS type of PsA. the good news is that there seems to be less difigurment and ptogressipn than AS alone and there is udually good resppnse to treatment.
Everybody is diffetent of course but usually effective managemet of this form of PsA starts with a Biologic and has a DMARD addeb later once the spinal symptoms are under control. The secondary things like sjorens and raunauds take care of themselves.
The most crititical thing with the spondylitis form is acomplete daily workoit no matter what and mattet how you feel. Yoi can lose finction petmanently in a mstter of days.
I have been diag'd as PsA with what looks to be most of the AS symptoms, even though I have tested negative for HLA-B27. Yes, the fatigue just plain ol' sucks but you just need to push through it. I get Remicade every 6 weeks, am on daily doses of Meloxicam and folic acid, and Tramadol as needed. I was on MTX but the side effects for me were nasty. I need to ask my rheumy if I can stop the folic acid now that I'm off the MTX. I deal with dry eye and mouth so I assume there is some Sjogren's going on. Keeping active does help even if you don't feel like it. I have a recumbent exercise bike that I try to ride 4 - 5 times a week for about 30 minutes. It's easy on the back, hips, and knee joints but can still give you a pretty decent aerobic workout.
Thanks tntlamb and Sherm for your information and help. I thought there was a distinction between AS and the spondylitis type of PsA, so thanks again for the info. I think my Dr. will be trying a biologic once he's got the final diagnosis. I was taking Simponi for a year and did not respond well and had a lot of side effects (almost constant mouth sores to name but one - and they're more prevalent now than they were pre-Simponi). I'm trying to remain hopeful regardless, it's just been rough the last year +..
Luckily I'm physically active so not much if any loss of mobility (except maybe my neck) .I was not aware that mobility could be lost so quickly: thanks again for sharing your knowlege and peersonal experience.
I have PsA / AS (and newly diagnosed active autoimmune hepatitis). The exhaustion is killer. I'm currently on Remicade to treat both, that being the drug of choice by myself and my doctor because the dosage and frequency can be adjusted and fine-tuned.
On days like today, after over a week of taking care of sick kids (we have five kids and they take turns getting gi illnesses) and being sick for 2 days myself while taking care of kids, I needed a day full of downtime. But that doesn't mean curling up in bed all day and not moving, because that could be devastating for my body. I read a couple chapters, got up and folded laundry and refilled my water, read a few more chapters, got up and did something else.... I wasn't up for my regular amount of exercise, but kept moving throughout the day so my joints wouldn't flare. For me, I risk flaring just as much from not moving as I do from too much movement.
I manage pain with tramadol, movement, heat, movement, tramadol, rest, movement, heat....
I also have PsA along with AS was diagnosised about 5 mos ago thur a MRI. I have been suffering unbearable for the last 2 yrs. my blood test always came back negitive and the Rhuemy kept saying I couldn't be in such pain when the blood work showed nothing. I finally begged for the MRI and it showed everything, he sent me to a pain spec. to see if there was anything he could do to help. The AS is very bad in my back and neck he started by cortisdone shots in the lower back which helped for about 3 wks, now he wans to burn the nerves in my lower back to help with the pain and moblity to keep me moving.That is to take place in a couple of weeks. But like you say the fatigue is a killer I force myself to keep working mainly because I have too, I live alone so I have no one to help out. I pray that this pain it under control soon so far nothing has helped. But I won't give up and I keep moving.
ESN, the procedure you are to have is a pretty good one. When you have had success with the regular injections, it has a high chance of succeeding. if the pain is in
your SIs even more. Some have an increase as it heals however. It doesn't last as long as they say. but 6 mos is bwtter than none.
The best thing you can do will be to get into some very aggresive PT with exercise regimne daily once the ablation takes effect. (wouldn't be bad to start early) Building up that trunk strength will serve you well. t
I have PsA and AS. My SI joint involvement is pretty serious, my neck is getting pretty bad, the middle back is tough in the morning and when I stand or walk for more than 10 minutes. I was told that when the spine fuses the pain goes away, so you loose a ton of your range of motion but you are out of pain. I'm not there yet so I can't tell you it is a fact.
Pain medications, movement, heat, ice and a TENS unit help me a great deal. Best wishes to you on your journey to diagnosis JW. I hope you get a good management plan to allow you to reclaim your old life.
Thanks to everyone for sharing your experience and knowledge about the spondylitis type of PsA. It's not so common I'm finding, my online research shows that anywhere from 5-20% of PsA patients have this form. It can always be worse as they say, eg. mutilans. I don't even want to think about that one.
I know what you mean about down time Nym: after 3-4 good days of work and/or activity, the fatigue takes over. My routine seems similar to yours, I take it easy yet remain somewhat active: I use these days to do light duties in and around the house. Tramadol is new for me but is definitely making things easier - it takes the pain down to a level that I can at least function. I've never used heat (other than baths & showers which definitely help) but I should dig out my heating pad for those tough days.
Esn, my bloodwork always comes back normal as well, and like you, I have been suffering for the better part of 2 years. I had one cortizone shot but it didn't seem to help .. the Dr. may try another. He says that also helps him make a diagnosis. My MRI is booked for next month, I'm just glad to have the Tramadol for the bad days, even though it's not covered under my plan. The fatigue you mention I know all too well: it's been with me since the onset of my PsA over 20 years ago. It's worse in the morning and some days are better than others but it gets really bad at times. Like you I live alone, so I just have to get it done. I haven't been keeping up with the ways things have been but again, the Tramadol had truly helped. I've never heard about the procedure you (and lamb) mentioned but it seems there are a number of treatments out there. Good on you for not giving up, I hope the procedure with the nerves in your back works for you.
Debbie, thanks for the well-wishes and letting me know that I'm not alone. My pain is at it's worst in the morning as well, usually lower back and hips. I've never heard of a TENS unit but I will definitely look into it. Reclaiming my old life? I'm really not sure if that's possible, but I'm hopeful. The pain and fatigue are far and away the most troublesome to deal with. If I can get my pain level under control and regain, say, even 60-70% of my energy, I'd be over the moon. One day at a time but things are looking better everyday.
Thanks again to everyone for sharing. Best wishes to all...
It helps with a specific pain area. I use mine for my SI joint and left leg/foot issues.
You need to read up on it and learn how to adjust it to help your pain and where to put the electrodes. It helps me, some people don't get any relief. I am glad I gave it a try.
Hope you get some relief soon. I would not be without my TENS, I was a bit cynical before giving it a go but never leave home without it, I only use it on my SI pain when I have stabbing pain and its been a life saver…doesnt work on any of my other pain areas just the SI.
You will learn your own rhythms what you can or cant do any given day. I always remain as active as possible and focus on what I can do not on what I cant. It can be difficult to stay positive sometimes but getting your head straight, seems to give you the ability to stay on track to looking after yourself properly.
I, too, have PSA and the spondylitis type. I am currently on Plaquenil for the PSA as it works for my fingers and have been on Sulfasalazine for three weeks and am up to the 2 pills twice a day for the last few days for my SI joint. I work full time and try to get up and walk around or do something physical at least every two hours or I lock up and its ridiculous. Every time I think I've figured out a trigger or solution or even if some random pain is related to PSA, something else comes along and surprises me. My Rheum tried Meloxicam right after diagnosis, but it made my blood pressure spike. The exhaustion is definitely the worst symptom. My triggers are carrying groceries, walking the dog and pulling weeds. So basic, yet, so painful! Gripping a bat or my golf clubs have also meant the next few days my hands were like claws. I am lucky to have a helpful husband but I have a three year old and just want to find a solution that gives me the energy to keep up with him. Is anyone else on Sulfasalazine and dealing with the nausea that goes with it? Please tell me it ends eventually!