I am about to take my 5th dose of MTX. I've been dealing with PSA like symptoms for 14 months (a least) & since I have started MTX it has actually gotten worse. I know it will take a bit for the drug to have any effect if it has one. The reason I (and my GP) are thinking it's PSA is that my bloodwork for inflammation & RA is negative and I had psoriasis in my teens.
So...my timeline is that it all started with pain in the back of my hand, progressed to elbows, wrists, and hands. It came & went for awhile and then started to involve my knees, ankles, and feet. These days it doesn't seem to really go away and I think my lower back is hurting from this as well. The other day I could barely walk on my right foot...that was a first. It felt like the bones in my forefoot were grating together.
Mornings are rough.
Anyway, I look back & I wonder if this has been an issue to a lesser extent over the years. Three-four years ago my left knee 'went out' after a simple twist and it took more than half a year to be able to bend it all the way. A few years before that my SI joint gave me grief for months - that too has 'gone away'. Somewhere in between there my right instep was very painful. Way before all that I had bad hip bursitis on both hips but especially on the right side.
I chalked all this up to sports related injuries - I am very active & I teach fitness. However, it didn't totally make sense to me since I cross train and overuse seemed unlikely.
So.....what has your experience been ? Did you have some clues somewhere along the way that something was up ? How long did it take to get a diagnosis ? I am awaiting another rheumy appointment - it was my GP that put me on MTX. Please share!
I know what you mean. When everything finally clicked I was relieved that I haven't been crazy all this time. About 10 years ago, every once in a while one of my fingers would get a little puffy and hurt- then it would go away. I believe I have had two rounds at least that long ago of costochrondritis but it was just called a pulled muscle. I have had plantar faciatis, 3 recurring bouts of the costo. Oops forgot about the psoriasis diagnosis about 5 years ago (extremely mild). The constant fatigue has been going on forever and has effected my relationships. I can fall asleep anywhere even while driving or at work. Oh yeah had a sleep study and on meds for depression and anxiety too. What finally put it all together was when my left foot, near my last two toes, became red and swollen. After a couple xrays they thought it might be a stress fracture that didn't show up on the xrays. When it didn't seem to be getting any better, I went to a podiatrist and viola, he sent me for bloodwork that came back with a positive ana. So he sent me to a rheumatologist who did more bloodwork an diagnosed me with PsA and Sjogren's syndrome (which explained gritty eyes, trouble swallowing and always clearing my throat). I'm taking prednisone- 10 mg 2x a day with barely any change. And awaiting my second appointment to discuss long term treatment. Everyday something new hurts or old pain returns.
I am still angry that after all these years it was never put together. I have seen the same GP for almost 20 years, and isn't medical info supposed to be shared with your gp- I always fill out who it is so I guess I assumed that the info was sent. Me other guess is that my gp just didn't have the knowledge to suspect. I am hoping that the damage that has been done is minimal.
It sounds like your gp was on the ball and finally put it all together. What has been your reaction to the MTX? My rheumy has mentioned that as a possibility.
Achy, you have a right to be angry, and probably your "hypotheses" are correct: some of your information didn't get sent to your GP, some of it did but just got filed in your chart without anyone really looking at it (when I worked in Medical Land that happened a lot), and probably your GP just didn't put it together.
It certainly does seem that someone should have figured this out - as in looked at you as a whole person with a constellation of symptoms, instead of one little symptom at one time in one place, and then another symptom at another time in another place, as if you were just a collection of parts.
I'm learning - from your experiences and mine - that I have to keep track of my symptoms, or possible symptoms - and put them together on a piece of paper in front of my doctor. It annoys me a lot when a doctor glances at my synthesis, puts it aside and starts asking questions that I've already answered in writing more clearly than I can by speaking. But the progress reports are still very valuable to me, because I can date when x started or y happened.
You seem to have a good list of problems you've had over a long period of time that are probably all or mostly related to PsA and Sjogren's. I hope that helps you monitor how things are going.
I'm glad you went to a better podiatrist than I did! Mine assumed that I had a terrible bone infection in my toe and foot and scheduled an amputation. I'm glad that my husband and I decided that she was just plain wrong - and that's hard to do - she's a doctor, we're just us. I may have a progressive, poorly-understood disease, but at least I still have a toe and an intact foot!
I'll think good thoughts for you, achy.
I'm sorry that "every day something new hurts or an old pain returns." When that happens for me, (and while I think I've had a rheumatoid problem for a long time, the actual diagnosis has been elusive), I feel scared about things getting worse and what will happen to me.
Wow....I had plantar fasciitis for awhile too....and costochondritis (scary - sharp chest pain!). See, I never put that together either. At one point my GP (former GP, retired) told me I was just prone to inflammation. Yeah.......
I was so upset about your story that I told my husband all about it last night. You know, it's as if you were a vehicle taken into the mechanic's and someone said: "Oh, needs a new heat pump" and didn't check anything else. I'm starting to think vehicles are better treated as - what do I call it? - whole entities, systems - than we are.
Anyway, my husband was properly incensed on your behalf.
The more I read about the rheumatoid diseases, and especially PsA, and as I read people's experiences here, I realize how poorly educated/informed so many doctors seem to be about a group of diseases that affect so many people.
Makes me realize how important it is that we educate ourselves, act as our own advocates and support each other in groups such as this. I'm really new here, but I've learned so much from you guys. Thanks.
Thank you so much for the posts. I feel like I am reading my own story. I too am angry. For years I dealt with plantar fasciitis, which threw off my gait resulting in hip pain, which resulted in the other foot compensating, resulting in plantar fascities in the other foot! Then it was knee swelling, and tennis elbow, the fatigue - don't even get me started on the fatigue! Then the inflamation in the cartilage between my ribs that they chocked up to an allergic reation to an antibiotic - it was an easy answer. All of the md answers were - you need to diet and exercise. This went on for more than 10 years. So once last time, a year ago, I swallowed my pride because my ankle was now deformed and went and made an appt. That is when the rest of the story began.
I am so very grateful to have found this website. Again, thank you for your honest posts - reaching out makes a difference!