Joint Deformity? Appointment on 7/1!!

Hi Shell74, I would see a Rheumy doctor to get a proper diagnoses.
They will do blood work, x-rays. It sounds like you may have the beginning stages of RA.

Hi!

Sorry to see and hear that you are in so much pain and are already dealing with many other conditions.

Regarding the titer of 6: 1 to 80 shows more RF in the blood than a titer of 1 to 20, so 6 indicates a lower RF level. Yes, different labs do vary a bit in the ranges. The RF can indicate many other conditions, also infections but RA is the most common culprit.

Well, I suppose it depends where you are but it can certainly be typical to get an appointment later than sooner. I had that experience recently with a different type of Specialist. The Nurse suggested that I get myself on the cancellation list since many people cancel their appointments. I got right on it, so hopefully I'll get in before my scheduled appointment.

I'm not sure what's happening with your hands unless you are talking about when you wake up at night with clenched fists or 2 or 3 fingers tightly flexed to the palm which is very painful. I used to get that in my earlier years with RA. It took a while until I could open my hands again. I do not know what that is called but I haven't had that in a lot of years due to medications.

There are so many hand problems that can occur like Ulnar Claw which be secondary to RA, Syringomyelia and a few other diseases.

Recently, I got a small lump on my palm and sometimes a small but noticable cord shows which is attached to it. I'm quite sure that is
Dupuytren's contracture. I don't have disfigurement or flexed fingers due to it yet though. Surgery is an option for some hand problems.

I also get cramping in my fingers when I am holding a mug sometimes or reading a book or the paper. My thumb and finger just clamp together. Very painful. I have to run them under warm water to release them.

Many people, especially Diabetics, get Trigger Finger which I presume is painful also.

I've never heard of an RA patient getting deformed fingers so quickly either. Maybe someone else has. Or perhaps you have had RA(or whatever you have) longer than you realize.

I have had severe RA for 30+ years and it was just within the last 5 years that my fingers started to deform some. That is because I had an emotional break cuz of the sudden death of a dear one, 8 years ago. I then got shingles and then all my meds stopped working. That all happened within 3 months. Then the deformity started a while after that.

Anyways, that's all I've got at this time. I do hope that you get to a Rheumy and diagnosis soon, if you have RA or some other type of Arthritis. There are over a 100 types, after all. Please keep us updated. Good vibes to you.

It took me 3 months wait to get into my RA doctor, but I got lucky to get a good doctor right away and he knew something was going on, but he finally ordered up a hand mri, which showed damage in 3 places on my right hand.
You should call your doctor and see if you can get on the cancelation lists...Sure hope you got a good RA doctor...ginger sometimes helps with my RA....keep us posted as we do care...

Usually, if the bloodwork shows up nothing then, doctor will do x-ray and then mri's. My doctor skipped the x-ray and did the mri as my bloodwork was mostly normal except for one, can't remember which one.
However, since you had bloodwork results your RA doctor will probably do more bloodwork, maybe an x-ray and then work with that, so you probably won't be ordered for an MRI...I'm just an unusal cases with only the mri picking things up...Enjoy your Sun time and wear sunblock!
Glad you got into your doctor early, hope the trip to the doctor is not too hard on you.
Also, schedule an eye doctors appointment for after your RA appointment as RA can effect the eye's and tell the eye doctor RA is suspected then you can get baseline eye pictures of your corneas...very important to keep a check on your eye health now...

My RA and PM doctor confir-ed one time on me, but I'm called functional on the meds I'm on, so nothing will get changed until a major increase in pain, I can increase the norco as needed for me, and I had reactions to quite a few pain medications, can't tolerate lyrica at all. So for me pains not in much control but as I cannot tolerate meds good I'm kinda stuck with what I take.
Once you get your dx either your RA doctor or your pm doctor can help you with the pain, I like having my pm doctor handling the pain, both have the same types contracts for pm people, you know the routine pee in a cup testing, ect...

Yes very understandable about you being nervous, so vent away. Sending a shoulder for you to lean on. Got my fingers crossed for you. Maybe try to get to a movie this weekend or try getting out to enjoy something or look into a good book as a little distraction. A little distraction can sometimes help.
Hope you have a god weekend!

My appointment is tomorrow and I am just wondering if there is a list anywhere of "must ask questions"? I dont want to miss anything once I actually get to the office. I tend to get nervous and flighty.

I am hoping that she will agree with my opinion to start aggressively. I have got about a month and a half till school starts and I want to make sure I can function with any side effects of meds that may come my way. That is of course if she agrees with the PCP's DX, maybe it is all a mistake, I will still keep my fingers crossed. Although, I am a very realistic, go with the flow person, it is what it is and just need to move forward instead of deny an issue.

Any suggestions would be appreciated!

Thank you golitho, I allready have a positive RF set of bloodwork, I am hoping she agrees to hit hard and fast. Working in the school system I cant even imagine being sick from trialing meds in the beginning of the year. At least if we start now, we could get a jumpstart.

I guess I am jumping the gun though. Just because the PCP dx'd doesnt mean she will agree.

Got to the office and got in nearly right away, a plus already! The dr was very nice, wanted lots of personal information, about how I am getting along with work and daily things. She is very nice and personable, maybe alittle to talkative. I saw her for about an hour.

She didnt do as much of a physical exam as I thought she would, but checked out my hands, wrists and feet. She had allready called the lab that I had the bloodwork done at because she didnt understand their numbering (titer of 6). Upon reveiwing/comparing thier tests they determined that it is equivalent to a level of 86 (she may have said 1:86, I dont remember). She said the hospital used an older testing method, but still reliable. Needless to say, she gave me a bunch of bloodwork to have done before I go back to her in August, more specific than the last round of tests.

She found small nodules in several of the larger knuckles on my hands, right wrist and toes, as well as swelling all around. Does anyone here have experience with their toes??? She is recommending that we start with MTX IM injection, 12.5 mg 1x week. Since I am a whopping 113 pounds soaking wet she wanted to start with a low dose. She did say MTX IM injection doesnt have nearly the side effects of oral meds, what does everyone feel about that? Thankfully, insurance processed this right away and it should arrive tomorrow. Need to start taking folic acid as well. She feels that this "should" do the trick for me quickly. She also feels that this has been going on for some time now, my first Rhuemy visit was nearly 10 years ago, but they determined that my dx was chronic fatigue/ fibro, made me feel like I was crazy and imagining things. No clue if those dx's were ever accurate. I will see her again in 6 weeks to asses how the MTX is doing. She doesnt feel at this point we will need to add another med. She also said something about placquinol (or something like that). I have the drs email and she said she prefers that I keep in contact with her that way, unless of course its an issue that warrants a nurse calling back ASAP.

She also mentioned coming in for some sort of infusions every few months based on my dexa scan results. I had a borderline result (.5 above needing treatment) on a heel scan 2 years ago before my gastric bypass. The PCP and Rheumy feel that based on that borderline result I will more than likely have a higher deficiency now because of my malabsorption and need follow up. Maybe I will luck out, we will see tomorrow.

I am ok with the DX, not thrilled of course, but what can I do about it besides embrace it? Like I said, I am very realistic and would much rather work towards my future than wrestle with the present.

Thank you all for your suggestions and support, Shell

I goofed above, I wrote IM instead of subQ, been a long day,lol. The dose is .5ml which equals 12.5 mg as well.

Chartreux, Do you mean you started at .3mg??

She said I could come in to go over the injection with nursing but I allready give myself a daily subQ injection for constipation so I dont think it should be an issue. The one I take now burns alot and is a big needle, she thinks this should be a piece of cake for me. The only issue I will have is someone getting the needle ready for me as I cant manipulate them real well right now. Mine right now is an auto injector so I dont need to worry about preparing a needle. I use a needleless syringe for my liquid meds and I am always dropping them and making a mess. Fingers crossed that those symptoms will start to decrease quickly!!

I completely forgot to ask her about the eye dr, but I put a reminder in my phone to make a call tomorrow.

I will have to look into the folic acid alittle more, due to my gastric bypass I usually need to take double the recommended to get enough absorbtion. It would be best for me to find a liquid, I found chewable ones tonight, but then fell asleep looking at the computer screen. Thankfully the dr seemed to have an understanding on gastric bypass workings.

I did talk to a coworker tonight that has had RA since age 4. She just recently was put on MTX injections as well as continueing Orencia. She told me she hasnt had any unusual side effects/illness which made me feel a bit better. But I am glad at least I am starting now instead of right before school.

I am thinking that once my car is paid off (new car so it will be 5years,lol) I will look into the Endless Pool. We looked before but couldnt see paying 20K for it. Wonder if it could be a medical expense covered by insurance,lol!!

Thank you so much for all of the info!

I got to my pharmacy today and picked up some folic acid but was surprised when I got the register and there was allready a prescription filled for the 1mg tablets. Then I went to ring my card for everything and she said the system was down for the entire day. I didnt have any cash on me, so they sent me on the way with my 4 prescriptions and syringes. It was a huge $23 but you dont find those kind of pharmacies around anymore, I was so surprised! I recently switched everything I get to that pharmacy because it would take the RiteAid near to a week to get in my liquid pain meds. I have nothing but good things to say about these people!

So I took my first dose tonight, we will see how it goes. It wasnt a real small needle but at least it doesnt sting like my other injection does, that one really hurts!

Sorry if I was unclear, she mentioned about the plaquenol but decided against it due to my tummy and low absorbtion rates. A least for now.

I did send an email yesterday to the dr about the eye dr, basically if there is someone she prefers. If I dont hear back I do have someone I went to occasionally, when we monitored due to high blood pressure.

In reading all of the side effects I am worried about the MTX. Of course they need to list everthing that is possible. I get sinus infections, pneumonia and whatnot easily. I work with small children, constant snot, sneezing and coughing everywhere, I may beg my supervisor to move me to older kids for the next school year. I really dont feel good today, very bad headache, dizzy, nausea and stomach pain, I feel like I am getting the flu. Hopefully its just a coincidence. I fell asleep yesterday and didnt get up for dinner or anything. Today I will force myself up and to eat something. We dont have any big plans, just kids over for the day.

As of now daily I do take 2 multivits, biotin 7500mcg, b12, vit d 2000iu, vit C 1000mg, cal citrate 1200mg. Now adding the folic acid as well at 1mg. I may need more than that considering my malabsorbtion from gastric bypass, I dont know.

Just one day at a time I guess.