Update on Shelly | Arthritis Information

Well, I have just been to the University Hospital in Denver, CO. The doctor there was looking for a change in Dx, maybe to Lupus and Sjogrens. Hate Sjogrens!! Well, labs came back and all were negative...even the RF test. So, the diagnosis stays, and I am trying to lose weight so I can start a DMARD again....the disease has marched on, and there is narrowing of the joint spaces and of course the OA thing has taken full advantage.

My feet have so much damage on the top bones...my foot structure is collapsing....we are hoping to implant an arch support, so I can have some structure. My plantar facia is so inflamed I have been through four steriod shots in each. My knees are shot and the Ortho surgeon wanted to be in my left knee yesterday, and he is not sure there is enough of my knee cap left to not do a total knee replacement. They are going to look at the SI joint and a nuclear bone scan, because of taking pred for six months or more....I have some thinning...or could it be that I am left without treatment.

So....nothing has changed and the disease marches on. Meanwhile hubby informed me with the counsellor there that he believes that my heightened sense of physical things and my tendancy to be a hypochondriak is the problem. He said, "Anyone with this disease would be out working and getting on with their lives, but you can't seem to deal with anything." That just happened at counselling on Tuesday. I knew it was an underlying feeling, but gosh...I asked him how he explained the damage. He said the doctor said there is no damage. Not yet from the PsA, but he does not listen to the other stuff like the narrowing and the other damage from suspected OA. He also believes that all pain is due to stress and not the physical damage or the swelling or disease process.

Gosh, it must be nice to be so smart.

Yeah, they all think they are so dam smart! I am so sorry you are going through this. I am doing similar without counsel though. You are not imagining things. He just doesn't want to accept the fact that you are not well. And getting on with your life comes with a goood DX and treatment. Prayers and hugs to you

Hang in there.. keep us posted.. I'll be thinking of you

coming back to say: not all sjogren's patients have the lab results.. just like not all RA patients have the RF factor... I have ALL the symptoms of Sjogren's and RD said, I don't need that DX on top of this one.. I am getting the treatments (eyes, and other things) for Sjogrens without the DX (Edited to add: the final test would be a lip biopsy... RD said we dont' need to put me through that for RX'ing)

Let them treat you for the Sjogrens symptoms... you'll feel much better...

babs102008-08-16 10:10:19I agree with Babs about the Sjogren's treatment. I had a lip biopsy about 5-6 years ago, which came out negative. Before my RA DX. So I had no treatment til about 6 months ago, when my RD said I have EVERY symptom of Sjogren's and she doesn't need another biopsy.

I am currently using Restasis to protect my eyes, as well as artificial tears. I recently began taking pilocarpine (Salagen) for the horrible dry mouth I had. It has been very helpful. I was even having a hard time swallowing due to the dry mouth. It even dried out my vocal chords. The pilocarpine has worked wonders, and I'm only taking half dose (one in the morning and one at bedtime.

If you are having the symptoms and no treatment, please talk to your doc about it. They can do things to ease your suffering from Sjogren's.

I'm so sorry your husband is acting like such a dumba$$! I know how much damage OA can cause. I can't even walk more than a few steps because of the severe damage to my spine from OA. I have to use a power chair and scooter to get around. I've had fusion on L4-S1 and it only helped the leg pain. The back pain is still almost impossible to manage. So don't let anyone tell you that OA doesn't cause severe damage. That should be obvious from the fact that your kneecap may have too much damage to do a replacement.

Good luck, Sweetie! We are always here for you. You have a lot of people who care about you and believe you. And you have our support.

Gentle hugs, Nini

Shelly- I don't know what to say. You must be very frustrated. Keep persevering for a dx and I agree counseling alone would be helpful. Did the counselor not intervene at all when he made that comment?I do have a positive test for Sjogrens, but the doctors did not want to treat me with a DMARD, because there was only narrowing and no "damage consistant with PsA" There is damage though, and it follows a pattern of Lupus....and Sjogrens is a Lupus based autoimmune disease. I have a lot of what they are calling OA damage, but I am 42 and without this disease....I doubt that I would have OA damage.

So, I called the University Hospital and reminded them about the Sjogrens and the mouth, eyes and other things that are dry and so the doctor relented and will Rx Imuran.

We did talk this morning and I told him he is no longer "allowed" at my appts. and I am not going to share that much about the disease with him....I am not going to have him hold his philosophies over me. I also told him that emotionally I don't really care for him right now and hopefully that can change, but this has been 20 years in comming. If our relationship would have been healthy, maybe we could salvage something, but our marriage was in trouble from the get-go.

(((((Shelly)))) I'm really happy that they're going to start Imuran, it's a step. Not sure I understand why the RD was reluctant to put you on a dmard but I'm glad you called.

I don't know what to say about your husband's lack of caring and support, especially his ideas that you have no damage after he sat there and listened to the doctor talk about the OA and PsA, knee and foot damage. Clearly he has selective hearing and I wouldn't take him to another appt. nor would I share any info with him. Why don't you stop couples counseling for awhile and go to individual? Lindy

Shelly, I'm sorry your hubby is being such a jerk right now. I just don't get it. Maybe denial or something, it doesn't matter. I have Sjogren's too and take salagen. I know when I've forgotten to take it. I always have a dry mouth, so I always carry sugarless mints in my purse and pockets. I prefer gum, but it makes my jaw sore.

Hang in there and don't put up with hubby's nonsense

Well, at least the charade of him caring is over. Lindy he would drive me to Ft. Collins to the RD appt., but he would sit in the waiting room....same thing when I did the infusions this winter....he would drive and just sit in the waiting room all alone. The infusion nurse and myself would ask him back. It was almost like he was affraid to come back in case he would catch something.

He is not coming to another appt, so I will be driving myself, which is scarry at best. I get tired so fast.

I have told him my disease is not his problem anymore and told him it is none of his business how I am and he is no longer welcome to info. I will work on taking him off of my HIPPA approved list. It was very sad...Saturday he wanted to hug me good night and just an automatic reaction....I pushed him away, and told him I am not emotionally there anymore and probably would not ever be there again. It really stinks that I need his insurance and financial support, but with counselling I will make it through this and forge something new for me.

The counsellor worked on unleashing some of the anger and man parts of that felt really good. She is very good for me and will let me get rid of feelings and let me talk them out all the way. I am interested to see how the couples counsellor goes this next time....my counsellor said...now that Jeff has shown is real colors and let down the facade of a "great Christian" the other counsellor can work a little more with him. I would just like her to tell him what a piece of crap he is for treating me this way, but she has to be professional. I will get my chance to tell him that!!!! When Jeff and I talked on Sunday he still backed his statement up....although he tried to lesson it to Most people instead of "Anyone else". He tried to tell me he did not say that....I told him we could call the counsellor.

Thank you for letting me vent.

I found some research on Sjogrens "Disease" I must say I fit that profile better than anything else, and it accounts for the OA damage being so devasting even though I am young.