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Author Topic: Rheumatology q's  (Read 2048 times)

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Offline Rosa

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Rheumatology q's
« on: February 12, 2003, 03:31:14 PM »
Hi all,
I'm new(ish) to the board, but was wondering if anyone has any advice...
Brief history - had two ops on right knee 2nd involving patellar shaving, removal of suprapatellar plica, lateral release and partial synovectomy in Sept 02. Still have constant swelling which increases on simply standing or any sort of exercise. Also really weak quads (despite working hard on PT). Synovial biopsy also showed cells/features consistent with RA. Blood is -ve for RA, and I only have the one knee joint affected.
I'm going back to see the rheumatologist next week, but am not sure what to ask. I should be getting some blood test results for 'inflammatory markers' (he also tested for RA again).
Anyone know what these inflammatory markers may be? Or have any ideas for questions I could ask?
Also, has anyone heard of PVNS? My biopsy of the synovium showed deposits of haemosiderin which is a characteristic of this, but it is apparently quite rare.
I saw the video of my last op, and the synovium was in a real mess - and tissue had grown into the intercondylar (sp?) notch which limited my leg extension. (My partner thought it looked like a seascape with anemones etc!). I havent had full flexion either due to the pressure of the fluid. (I'm not on any anti-inflams as any that have been tried have limited effect).
For those of you who have had LR/debridment etc, can I still expect this constant swelling 5 months post op? The knee isnt hot and inflammed, so the dr doesnt think there is an infection there.
My worry is that I still have the same pattern of increases in swelling with certain activities as before the op, and that there is another underlying problem like RA. Also, cant things in this fluid attack cartilage and make the problem worse?
Sorry about all the questions - and many thanks for any input
Ros
06/01 'scope rk: patellar shaving, synovial biopsy. 09/02 'scope rk: patellar shaving, suprapatellar plica, adhesions, LR, debridement, partial synovectomy. Swelling & seronegative monoarthritis.

Offline LucyC

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Re: Rheumatology q's
« Reply #1 on: February 12, 2003, 04:28:55 PM »
Hi Ros
I think you know my condition by now as I'm pretty similar to you (-ve RA but still symtoms consistent with RA) so I won't go into any detail. I know that the "inflammatory markers" they look for with my blood tests simply relate to the amount of inflammation within my body. It should be a tiny number, however mine is at the moment around 45 and the lowest its been is 18 (I think, but don't quote me the value should be under 10) but it has peaked 60+. Check what the "normal" value is for each test you've had done and to what extent your values have deviated...i.e. should you be worried. then you can get a better understanding of how you are compared to a "normal" person, and if things are sky high then you should be getting some serious treament ASAP!

I too had problems with the anti-inflammatories I was taking, I am now on Diclofenac 3x a day which apparently will take 2-3 weeks to kick in (hopefully by then I'll be operated on) but they are pretty strong ant-inflamms. I did mention to you about oral streoids for reducing the inflammation, I couldn't have a steroid injection as the swelling had moved to a different part of the joint capsule and was inaccessible by needle, so I had oral steroids the theory being they'd be able to attack it from the otherside. This would have worked had the synovium not become so thickened, so if you've had a partial synovectomy I would think they could work for you...ask the rheumatologist.  

I have heard of PVNS as its something I'm questioning as a cause of my problems, however past joint fluid analysis has so far been negative for it. It is a rare condition, around 1 in 500,000 affected. Personaly I would get the rheumatologist to clarify whether the weird growth of the synovium was down to PVNS or just a coincidence therefore he'll be able to treat you for the seronegative arthitis or the PVNS, one things for certain, you need to find out whats going on so you can be treated soon and therefore can start to get better.

Above all, tell your rheumatoligist you're worried about your situation and about the fluid possibly attacking the cartilage. He's there to find out whats wrong, to treat you and to reassure you

It must be so annoying to have gone through all that surgery to still be having problems. Let me know how things go with the rheumatologist next week, if I think of any more things I'll let you know.

Take care for now
Lucy
Jan 01:swelling LK: arthoscopy,diagnosed - seronegative monoarthopathy. Symptom free 1yr. June 02 constant, painful, swellings.March 03 - partial synovectomy. Worse swelling. Jan 04 open synovectomy

Offline Rosa

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Re: Rheumatology q's
« Reply #2 on: February 12, 2003, 05:00:09 PM »
Hey Lucy,
thanks for this.
The story with my rheumatologist is that I tend to have appts at 2 month intervals, and each time I go, I see a different doctor in the clinic. This makes it difficult to build up any sort of rapor, and every time I go back it is like going back to square 1 again. In one way I guess it is good to get more than one opinion - but this time I think it will be about my 7th! However, it is the national hospital for rheumatic diseases & I've been told that its the best place - the problem is that I think different doctors come in for a stint in the clinic to gain experience and then are off again... so its no use requesting the same dr again.
Some have been helpful, others very dimissive (one saying just to leave it, not to come back, and see if it goes away on its own!)
Anyway, I'll write my questions down this time.
Hope you are ok - I'm willing that op on for you...
Ros
06/01 'scope rk: patellar shaving, synovial biopsy. 09/02 'scope rk: patellar shaving, suprapatellar plica, adhesions, LR, debridement, partial synovectomy. Swelling & seronegative monoarthritis.

Offline Rosa

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Re: Rheumatology q's
« Reply #3 on: February 18, 2003, 03:28:27 PM »
Well, saw the Rheumatologist this morning. The good news is that RA is negative (as it was last time), and that all the inflammatory markers are at normal levels - indicating that there is no inflammation elsewhere in the body. She also confirmed that tests for PVNS were negative (I didnt realise these had been done, but I guess it is routine for these situations).
I had loads of fluid drawn off (she kept having to change the syringe as she filled them!) and a steroid injection. If this doesnt work, or if it works for a while and the problem re-occurs, I need to think about taking a drug called sulphasalazine. After that, I think the only option left is a complete synovectomy.
many thanks for your help
Ros
06/01 'scope rk: patellar shaving, synovial biopsy. 09/02 'scope rk: patellar shaving, suprapatellar plica, adhesions, LR, debridement, partial synovectomy. Swelling & seronegative monoarthritis.

Offline LucyC

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Re: Rheumatology q's
« Reply #4 on: February 18, 2003, 03:59:54 PM »
Hi Ros,
I'm glad they're finally getting somewhere with you. You now sound exactly like what happened to me. They aspirated my knee so many times there should be a permanent scar from the needle and like you the syringe had to be changed many times (not nice is it) they once drew off 250ml!!! OUCH.
Anyway hopefully the steroid injection will do the trick for now while the fluids out of the knee. Just remember to rest it as the more it moves around the more the steroid gets dislodged.
I got put on Sulphasalozine and was told that I should only be on them for a year and that should be enough (of course you know now thats not true!) Hopefully this WILL work for you if you have to take them (I'll have my fingers and toes crossed). I managed perfectly well with no swellings for a whole year with only a low dose of the Sulphasalozine (some funky side effects that are a bit shocking to start off with...don't worry nothing too serious). I was about to come off them when my other problems started but I'm sure it can't happen to two of us...and if so then at least I'll have had the synovectomy by then and you'll have someone to ask loads of questions to.
I'm glad the PVNS is negative and there is no other inflammation in your body, I'm not a doctor but things seem to be looking a lot more positive for you...I hope you're feeling that way too..

Anyway take care and keep that knee up and resting!
Lucy

PS as you can see still no OP, but I have been told by the hospital I'm now top of the cancellations list so any day now.......am a lot more positive than I was the other week
Jan 01:swelling LK: arthoscopy,diagnosed - seronegative monoarthopathy. Symptom free 1yr. June 02 constant, painful, swellings.March 03 - partial synovectomy. Worse swelling. Jan 04 open synovectomy

Offline Shazinoz

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Re: Rheumatology q's
« Reply #5 on: February 18, 2003, 06:39:57 PM »
The inflammatory markers in blood work are ANA (anti Nucleaer Antibody ) and CRP (C-Reactive Protein), sedimentary rate, and I think there is one or 2 others. I am a weird one in that I have an elevated CRP sometimes well often and even weirder is the fact that I sometimes have a +ve ANA and other times I have a -ve ANA (This is the marker for auto immune diseases including RA). They may also test you for HLA B27+ (I have this) (it is Human Leukocyte Antigen number B27+)
this is a gene that makes susceptable to certain types of arthritis and other things.
Write down a list of questions that you can think of for the rheumatologist (and remeber they don't JUST deal with aarthritis they deal with other problems too)
THings like if it is athritis, what can you/we do about it?
If it isn't arthirits then what is it?? and can you help me or can you send me to someone who can help me.
I was diagnsed with JRA at 12 years old and then also diagnosed with sero-negative spondolo athrtitis sp? as well.
I hope this maybe helps a little.
GOOD LUCK and HI and Welcome  ;D <wave>
2 ACL 'reco's', 3 'scopes', Pain, JRA, EDS, RSD, CMP, osetochondral defect & #, synovitis, adhesions, nerve damage, foot drop, MCL damage, tendonitis, fibrosis, ligament damage AGAIN, dislocations +++

Offline Rosa

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Re: Rheumatology q's
« Reply #6 on: February 19, 2003, 03:26:35 PM »
Hi again,
thanks Lucy/Shaz,
yes I do feel more positive about it. I think I am one of the lucky ones, reading some of the other posts on here.
It makes such a difference to see a doctor who makes time for your questions and says things in a more positive way - even if its the same things as have been said before...
Lucy - I'm glad you are feeling more positive and you are at the top of that list. Be sure to let us know when its done and how you are getting on. By the way, I found a bit more info on sulphasalazine which recommended to supplement folic acid.
Good luck to you both, and thanks again
Ros
06/01 'scope rk: patellar shaving, synovial biopsy. 09/02 'scope rk: patellar shaving, suprapatellar plica, adhesions, LR, debridement, partial synovectomy. Swelling & seronegative monoarthritis.