I am new to to site and not sure how this all works yet, so forgive me if this is not the correct area to post but here goes. After a 2 year+ journey, I was given the diagnosis of psoriatic arthritis a couple of weeks ago by my rheumatologist. Obviously being this new I have a lot of questions, almost to the point where I don't know where to start so I'll just begin with my story.
My joint pains started late 2013 when I began waking up in the morning pain and stiffness in my hands, feet, neck and back. I could not fully close my hands from the stiffness and it would take me about 30 minutes just to get out of the bed and then another 30 min hot shower to get me to where I could move around enough to get ready to go to work. I would then go sit in the car for 1.5-2 hrs (depending on traffic) and then sit at a desk all day and then make the return 1.5-2hr trip home. Needless to say none of these activities were very helpful to my pains. Finally one morning I woke up to my middle finger locked in the closed position. This led me to see my GP and he diagnosed me with "Trigger Finger" (tendonitis) and sent me bloodwork and x-rays on my hands and feet. I got a call from his nurse a few days later saying everything was fine and that I just needed to lose some weight to help my joints. I started exercising and eating better, lost some weight and the pains got better, but never fully went away. A few months down the road it started getting really bad again. This continued on and off until the past December when it was getting harder and harder to get out of the bed in the morning due to the pain and stiffness all over and I was noticing that I was always fatigued, even after a full night’s sleep. I also developed trigger finger in my ring and index finger on my left hand. After sitting down and talking with my wife, we backtracked my symptoms and realized that this had been going on for over 2 years and I just hadn’t realized it had been that long.
I made an appointment with a rheumatologist, but I could not get in until March. At my first appt., she sent me for bloodwork (and a lot of it) and x-rays. The results came back negative for RA and Gout, but she found that I was positive for HLA-B27 (the previous bloodwork was inconclusive on this test and my GP failed to even mention that), which can be a marker for the spondyloarthritis group. She sent me back for x-rays on my lower back as well as requested I go see a dermatologist after finding out that I have had “rashes” in my ears for quite a while. The back x-rays were negative for ankylosing spondylitis, but the dermatologist appt revealed that the issue with my ears was in fact psoriasis and not eczema as I had been diagnosed with 7 or 8 years ago (which explains why the cream they gave me never really made it go away). Based on this new info and the fact that ibuprofen or naproxen had given me zero relief from the pain, she gave me a 6 day treatment of methylprednisolone and then started me on 75 mg diclofenac sodium twice a day. I have a follow up in 2 weeks to see how I respond to these meds. If nothing gets better, she said we would go to DMARD’s and then biologics until we find one that I respond to. She said the whole process could take up to 4-5 months.
That pretty much gets me to today and I am 2 weeks in taking the diclofenac and I’ve felt no improvements in my pain, so my main questions right now are:
has anyone had experience with diclofenac and if so, any positive results within 2 weeks?
Does diclofenac make you sleepy as my fatigue seems worse over the last week?
is this trial and error method for medications pretty standard and if so, how long did it take to find something that worked?
has anyone else experienced the trigger finger/tendonitis along with their PsA? My rheumatologist seems to dismiss it as an unrelated issue, but I’ve read a lot of articles that says tendonitis is common with PsA.
I know this is a lot, but I am just trying to get my arms around this with it being so new. Thank you so much for any experiences anyone can share!
Hi Rob. :( Ugh I just shook my head when I started reading....I hate PsA!!!! Makes me sad for people new to diagnosis and going through all the confusion, worry, anger, etc.! It'll get better now that you're with a rheumatologist and starting treatment.
IDK about the diclofenac, but I wanted to ask if the methylprednisolone made you feel any better? I was given it a couple times before I went on Enbrel, and that stuff made me feel like I was walking on air! When I begged my rheumy for more of it he refused and told me it wasn't good to take too much of it. Shortly after that I went on Enbrel, which worked really well at first, and pretty good still (nearly two years later).
Your symptoms sound a lot like mine--stiff and painful back and neck, stiff painful fingers/hands, crushing fatigue. I can make a fist now, but I couldn't then--but never had trigger finger. My elbows and shoulders and other joints would lock up, though--which was very painful to get them moving. It was like being the Tin Man without his oil can!
The tendonitis is common I think--I had it in my wrists and shoulders, and some stiffness in my Achilles tendons.
Hopefully you will get good treatment within the next few months as your rheumy said. I didn't do the trial and error method with meds because I refused to take them (other than the couple prednisone tapers) because I'm afraid of meds. I didn't have a hard time getting Enbrel because by the time I agreed to go on it I had had moderate to severe psoriasis for nearly 40 years and psoriatic arthritis for 6 years. Don't wait that long--especially cuz your back is involved. My back is damaged because I put up with that terrible stiffness in mine for several years, not knowing that was damage in the making.
Be proactive and let us know how it goes! Hopefully someone else will have more information about diclofenac.
Hi rob and welcome! I used diclofenac many years ago (am now allergic) way before I was ever diagnosed with psa - didn’t make me tired but as I understand it (I may be wrong) although it may relieve inflammation it won’t stop the progression of psa. It is also I think, not great to take for a long period of time.
Trial and error with medications seems to be par for the course - that’s because there are so many medications and some help one person but not another - I have no idea why that is at all. I am currently on methotrexate and humira. I was terrified of taking both but to be honest they’ve been pretty fine. I didn’t get on with enbrel but many people do and find it very effective. Your increased fatigue could be psa related! I was constantly exhausted before I started on humira - the one thing I’m sure of is that humira massively improved my energy levels!
4-5 months seems great - I know it seems long to you right now!! It took me over a year to get on a biologic then another 3 months to get humira - it’s a long process but hopefully you’ll be lucky and hit on a winning combination early on.
Welcome! I am recently diagnosed (in January) with PsA and Ankylosing Spondylitis. Naproxen was my first NSAID, and worked well for some PsA symptoms, but didn't help my back pain. Diclofenac was the second one I tried. Diclofenac immediately worked well for the back pain, but other PsA symptoms began showing up in my arms, hands, legs and feet after I started it as they were no longer being helped by the naproxen. I also had some tummy upset, and nausea from diclofenac, but not being in agony was well worth it for me.
Unfortunately, my blood pressure went through the roof on diclofenac and I was immediately taken off it and put on Meloxicam (which has been great for my back pain). I am now also on a DMARD - Sulfasalazine, for my PsA symptoms.
I agree with Golfnut that your fatigue may be from the PsA and not the meds. I suffered with crushing fatigue for 6 months from September to February (4 of which I took off of work for medical leave). Once I got the inflammation under control with the right meds, I regained my energy, and other than having a bad week last week, I have felt more like "my old self" the last couple of months.
The trial and error method is definitely par for the course. I am still going through this myself. I have been on 4 different medications since the end of January. It can be frustrating as there can be side effects, and sometimes the meds can take weeks or months to kick in. You need to be patient, take notes about how you are feeling from day to day, and check in with your doctor regularly if things aren't working for you or if things become intolerable.
I never had trigger finger, but I have had some tendon/ligament pains over the last few months. They seem to resolve within a few days, but my Rheumy did say that those can be "classic PsA".
All the best to you. You have an excellent resource in this website. There are a lot of amazing people here who are more than happy to share their knowledge and support.
Hello, Rob! I'm not sure if I've welcomed you yet, so a HUGE Grumpy welcome from me is what you need first! To adress your questions, yes, I have taken diclofenac. It think it was one of my first prescription NSAIDS? It was years ago, so I may be a little iffy on the details, but I think I took it for a month or so early on. I don't recall it helping a whole lot. Honestly, I went through several Rx NSAIDS before we settled on one that worked well. It is different for everyone. Fatigue is not a common side effect of dicolfenac, but it IS a big component of PsA. It may be conincidental that you're feeling it more this week. Personally, I notice that my fatigue is worse when is rainy, or I'm experiencing a lot of stress, or we are really busy. The NSAIDS are not meds that you need to accumulate in your body before feeling results. If you're not noticing any relief at all, it may be time to try a different one. However, with med management of PsA, the better drugs are going to be the DMARDs and the Biologic drugs. These are the ones that stop or slow progression of the disease, thereby limiting the damage your body does to itself. Hopefully, your rheumatologist is planning to move in that direction soon.
Trial and error is totally common with PsA treatment. As yet, there isn't a better way. I have heard about using genetic testing to help customise medication selection, but I think that technology is on a distant horizon. Even though the hunt-and-peck method of med selection is initially frustrating, you will find a drug that works for you and helps you to get back to your usual routine. it's not easy to put a time on how long it takes each of us to find the right drug. A lot of us hit the jackpot with the first DMARD or Biologic and feel wonderful within weeks or a month. A small few have a harder time and need to kiss a few toads before we find our prince.
Tendons-A-Screamin'? Absolutely! That is super common with PsA. The DMARDs and Biologic drugs have a big impact on this too, not just the joint inflammation. You'll notice with the correct medication combination that a lot of the other little issues that accompany PsA, like the fatigue, psoriasis, eye dryness, joint discoloration, weird growths on joints, tendonitis, enthesitis, etc., will resolve along with the joint inflammation.
I hope this helps some. Please make sure to take a look at our Newbies Guide to PsA when you have a moment or six. There is so much helpful info there for folks like you that is written by people who have been right where you are now.
I don't think your questions are OTT at all, they are really clear & a good starting point for getting to grips with this disease.
What strikes me as great is that your rheumy has a plan and is sharing it with you. Trial and error is the way things go & would seem to be justified, as others have said. But when there's no obvious plan, or the rheumy is keeping it to themselves, then trial & error feels extra frustrating.
The drugs you're trying may well help but they won't control the disease. Before diagnosis I was eager to start disease modifying drugs as I already thought I had RA and had found out that it could be controlled and limited, same as PsA. And anyway I'd been taking Ibuprofen for some time & it didn't touch the swelling, the pain or the fatigue. In your shoes I'd want to get on to the next stage.
Fatigue is grim. But it can lessen considerably. Indeed, it can be virtually banished with the right treatment. Although steroids are best used as a stopgap, you may well find that they do help with that. I hope so.
I've got a great rheumy but he doesn't have a lot to say about enthesitis, tendonitis, bursitis or any other 'itis'. Now that my PsA is well-controlled he just says 'inflammation!'. So I follow suit and put up with itis this and itis that. If I had really bad tendonitis etc. despite being on a biologic and a DMARD I'd jump up and down & ask for a re-think.
Tendon inflammation is part of the disease process. For some people, this can be one of the most challenging aspects. If you look up trigger finger, you will see that inflammatory arthritis is one of the risk factors for it. I've had one released on my thumb, and have occasional trouble with other fingers locking up. I just had an MRI done on my knee, to look at "tendonitis" that wasn't responding well to physical therapy.
Your fatigue may be worse due to worsening fatigue, as opposed to the diclofenac. Personally, I liked diclofenac, and still use the topical as needed. That said, it doesn't control the disease process, so over time I would expect to be put on a disease modifying drug (DMARD) to control the disease, with an NSAID helping with inflammation and pain.
There's lots of great support and information here. Try not to get overwhelmed.
Thank you all for the warm greetings! I hate to read what you all have gone through, but it is comforting to hear from and share with real people that are going through the same things! I was having a bad week mentally, so it really helped to hear from you all.
I did not notice any changes from taking the methylprednisolone other than being irritable. I feel much better about the meds and the process now, the 4-5 months doesn't seem nearly as bad after reading your responses. Based on what my rheumatologist said last visit, if there are no changes with the diclofenac by my next visit (which is 2 weeks from today) we would move on to Methotrexate. I wasn't holding out much hope for the NSAID's since 3 ibuprofen were not having any effect on my pain or naproxen, so I just quit taking them.
Interesting comments on the stress, as it has been a higher than normal stress week for me. Maybe that's the reason for the increase in fatigue and pain I've noticed over the last couple of days. I've also noticed that I've been having trouble sleeping at night?
Prednisone will make it hard to sleep. You might stay on the diclofenac for now, even once you start MTX. You’ll find lots of great info here on how to make MTX use go smoothly.
Rob said:
Thank you all for the warm greetings! I hate to read what you all have gone through, but it is comforting to hear from and share with real people that are going through the same things! I was having a bad week mentally, so it really helped to hear from you all.
I did not notice any changes from taking the methylprednisolone other than being irritable. I feel much better about the meds and the process now, the 4-5 months doesn’t seem nearly as bad after reading your responses. Based on what my rheumatologist said last visit, if there are no changes with the diclofenac by my next visit (which is 2 weeks from today) we would move on to Methotrexate. I wasn’t holding out much hope for the NSAID’s since 3 ibuprofen were not having any effect on my pain or naproxen, so I just quit taking them.
Interesting comments on the stress, as it has been a higher than normal stress week for me. Maybe that’s the reason for the increase in fatigue and pain I’ve noticed over the last couple of days. I’ve also noticed that I’ve been having trouble sleeping at night?