A question about inflammatory arthritis?

[MAT51]

Hi All - been a bit lousy and head down with extreme fatigue and GI problems/ dysmotility  - which have both slowly worsened since I moved up to top dose/ 3g of Cellcept a month ago. The SFN pain has been bad too - especially in my legs.  Nothing seems to help with these

However my question here  relates to arthritis. Having previously been misdiagnosed with RA, now rediagnosed with primary Sjögren's - I find that the significant osteoarthritis around my body is progressing - particularly in my lumbar spine. This makes standing still in queues or chatting more or less impossible. As well as this I have arthritis in neck, hip, knees and hands but not as severe as the stuff in my lumbar spine.

So what I wondered is whether this is just wear and tear arthritis that I'm going to have to learn to live with - or if it's in fact some form of inflammatory arthritis? Is inflammatory arthritis part of Sjögren's for some or is it a separate condition to Sjögren's? Would it show up differently to OA if it was PsA or Ankylosing Spondylitis? I know RA erosion differs clearly to OA in imaging but what of other forms of inflammatory arthritis? I ask this mainly because my inflammatory markers in my blood show up high when I have particularly bad flares of this arthritis pain. But I'm aware that it's only too likely that I have both. I ask because I'm seeing my new rheum again next month and want to know what symptoms to highlight with her as she hurtles like an express train through consultations so I don't want to waste any time talking about osteoarthritis!

[irish]

I don't know much about inflammatory arthritis other than I have had it a lot over the years. It has been driving me crazy the past couple of years and makes shopping, doctors trips, etc a challenge. Sometimes I am very weak and the add the pain and I am so lucky I haven't fallen yet.

Just to let you know that I have inflammatory cystitis or IC ..interstitional cyctitis just diagnosed this past Thrusday. The pain in my bladder was pretty bad along with incontinence frequently. I haven't had a chance to talk with immunologist about this yet. However, my urologist put me on Xyzal 5 mgm every morning and also Benedryl 25 mgm at bedtime to help me sleep. I have not taken the Benedryl as I set my alarm to get up every 1 1/2 hours for the bathroom. The Benedryl makes me way too sleepy.

However, Xyzal(which I have taken as needed for my rashes) is not supposed to make a person sleepy but when I take it every day I find myself dosing off a lot. My bladder pain is less....and....my lumbar sacral pain is less. I usually have either cold pack or warm pack on my back and can hardly do things around house and sometimes taking a step is miserable. I just noticed this morning that my back isn't hurting.

Now, I don't know why but the only thing that is different in my life is the addition of the antihistamine Zyxal. One can buy this drug over the counter in the states now. I had a script but will see what the cost is OTC. Just some info for you. Thanks for your info and good luck. Irish

[irish]

I have taken Plaquenil with both Methotrexate and Cellcept. Plaquenil is an antimalarial drug and as far as I can tell most people on this forum have been able to take the plaquenil along with immune suppressants or dmards. Your doctor will know the specifics on this one.

Also, when I took the methotrexate I also was put on the folic acid. I was told that the folic acid helps protect the body from some of the side effects of the methotrexate. The one thing that is helped by folic acid is the nausea and flu like symptoms. Other with have more info for you.

I will tell you that when I take new meds I only start one drug at a time for a few weeks before adding the second drug. It is so darned hard sorting out side effects if we start several drugs at once. Good luck. Irish

[Jasper]

Inflammatory Arthritis can be part of Sjogren's Disease (and is caused by Sjogren's Disease).  Sjogren's inflammatory arthritis does not cause erosion of the bone but it can cause inflammation, redness, pain, and/or tissue swelling.  It can occur in many different joints.

Here is a link to an article about Sjogren's inflammatory arthritis by Dr. Baer of John's Hopkins:

https://www.hopkinssjogrens.org/wp-content/uploads/2009/11/Joint-pain-in-SS.pdf

It the link does not take you directly to the article, click on the link that has "joint pain,  Sjogren's, Johns Hopkins"  in the title.


A note about Cellcept:  I was on it for 2.5 months (got up to 2 grams per day) and it completely took away my joint pain. However, it worsened every other Sjogren's symptom. Fatigue was unbearable. I could barely get up. Cognitive impairment was severe. I was nauseated and had explosive diarrhea. I felt horrible. I was existing but not living. The symptoms improved considerably (and some symptoms, such as GI symptoms, completely disappeared) when I stopped taking Cellcept.  I then went on Rituximab infusions and have had dramatic improvement in my Sjogren's symptoms.

If you have had no benefit from Cellcept, maybe your Rheumatologist consider Rituximab or another drug.

[MAT51]

Thanks for your responses Irish and Jasper. To Irish I'll apologise for not putting on my signature info that I tried and had severe reactions to Sulfasalazine, Methotrexate, Plaquenil and Imuran so Cellcept is my last attempt at DMARD.

Jasper I've made to to 3g over an 8 month period but I do feel like a walking zombie and am bloated and not feeling many benefits although I have stopped using a cane because my balance has improved and the synovitis has entirely left my knuckles now. Could just be a coincidence though as sed rate and CRP are fluctuating at same elevated levels as previously.

As I'm seronegative (+ANA and lip biopsy 100% positive but not ENA panel) I'm told I probably won't be offered Rituximab unless I develop Lymphoma? But maybe this will be the next option if my new rheum agrees that Cellcept not doing much. I do hope so because, although I'm scared of such a big biological drug - I'm finding the oral meds very hard going on my GI system. But so far the GP has attributed my extra fatigue to Sjögren's inflammation and pointed out that my full blood count is fine and I already suffered from abdominal issues prior to taking Cellcept. It's a hard one feeling rubbish all the time and not being sure of it's the disease or the immunesuppressant. Hey ho. Thanks for explaining about the IA of Sjögren's. I think I'm getting there slowly but surely however I'm guessing that CT imaging would have given sufficient info to show whether my lumbar arthritis was inflammatory or wear and tear?

[anita]

As you know, I have Psoriatic Arthritis.  One of the tests that confirmed this inflammatory arthritis vs a wear and tear arthritis is using ultrasound to check for fluid in the finger tips and toes.  I'm not sure but thought you had this done at some point...am I correct?  If so, what was the finding? 

When was your last MRI of spine, hips, etc?

There are many new treatments for PsA and other inflammatory arthritis', but I don't think they would consider them with you taking Cellcept.  I cannot take any of the treatments due to my primary immune deficiency (CVID). 

At you appoint next month, just describe your symptoms, previous tests you've had, and let her test and determine what is going on.  But ask her about 'testing', so you know for sure.

[MAT51]

Thanks Anita. Sorry to be slow to reply - eldest son took me by surprise, returning from 15 months in Australia - plus I've been horribly unwell with nose bleeds, GI issues and blood clots coming from my throat during the night - making me gag!

Yes I had a CT scan last year and all that showed was "severe lumbar wear and tear so I'm guessing this is the main area of Arthritis for me although I have it in my neck, hips and hands too - knees have never been looked at yet. Hands were only checked with ultrasound once in 2015 by rheumy no.2 while I was on Prednisone. Obviously I had synovitis when I was initially misdiagnosed with RA in 2011 but only has wee pockets of this in the intervening years.   I have been advised to stop back to 2.5mg Cellcept again and have finally been referred back to ENT - who spurned the first GP referral earlier this year! Hey ho. X

[irish]

I don't know if you saw some of my postings about antihistamines. I recently was diagnosed with inflammatory cystitis which is very miserable and put on Xyzal (OTC antihistamine) which sees to have knocked down a lot of the pain. Also, I have been suffering from pain of inflammatory nature over a lot of my body including my back, hands, etc.

I have noticed that since taking the antihistamine my pain is much less. Now... I am not saying that this med is helping all these things, but it has me highly curious. I go for my IVIG next week and plan to ask doc about decrease in pain. I have enjoyed having less back pain as I have been spending a lot of time sitting with heat and cold on my back to make life more tolerable. I have osteoarthritis plus I have inflammation of any of my tendons at any given time which is miserable also.

Allergies are very akin to the autoimmue and immune issues so anything is possible. Just some info. The Xyzol is like Benedryl only does't cause as much sleepiness. Good luck Irish

PS Are you having a nosebleed that won't quit?? Sometimes one has to go to ER or doctor to get the bleeder cauterized.

[MAT51]

Thanks Irish. I can't recall a time when I didn't take antihistamines of one sort or another. I'm such an  itchy person that I don't sleep easily without them. But only at night unless I have a full scale allergic reaction. My nose bleeds do stop although sometimes they are pretty alarming! I'm thinking it's just to do with dryness, humidity etc. It was just these ugh black clots I was rather concerned by as never had these before. A man RA friend wonders if I might have a deviated septum which would make some sense I think. I wake every few hours most nights unless I've taken a  Zopiclone sleeping pill - but as they are highly addictive!

I do hope antihistamine continues to help you. Mat

[MAT51]

I don't know if you saw some of my postings about antihistamines. I recently was diagnosed with inflammatory cystitis which is very miserable and put on Xyzal (OTC antihistamine) which sees to have knocked down a lot of the pain. Also, I have been suffering from pain of inflammatory nature over a lot of my body including my back, hands, etc.

I have noticed that since taking the antihistamine my pain is much less. Now... I am not saying that this med is helping all these things, but it has me highly curious. I go for my IVIG next week and plan to ask doc about decrease in pain. I have enjoyed having less back pain as I have been spending a lot of time sitting with heat and cold on my back to make life more tolerable. I have osteoarthritis plus I have inflammation of any of my tendons at any given time which is miserable also.

Allergies are very akin to the autoimmue and immune issues so anything is possible. Just some info. The Xyzol is like Benedryl only does't cause as much sleepiness. Good luck Irish

PS Are you having a nosebleed that won't quit?? Sometimes one has to go to ER or doctor to get the bleeder cauterized.

Relating more to your experience as have had horrible abdominal pain for about ten days - finally got a doctor to check my pee and he found high Leucocytes indicating a UTI. He's started me on antibiotics now but I'm wondering if I might have Intestertial Cystitis. Is this common with Sjögren's do you know or is it just a coincidence? I feel awful!!

[irish]

First of all, you need to get the UTI treated and from the sounds of it you have had symptoms for quite few days. Generally, the longer the bladder infection goes untreated the higher the chances of needing more days of antibiotic.

Secondly, Interstitial cystitis doesn't usually have infection. I had about 3 urine checks done and they were all free from infection. You will have to wait until the infection is over and then wait a few weeks to make sure it doesn't come back. Urinary tract infections are famous for returning in the days to weeks after the antibiotic is finished.

The only way you will know about the IC is to talk with your doctor about it and if he feels your have the criteria he could do the cystoscopy. I can't say for sure that autoimmune disease is the cause of the IC but it is on the list of possible reasons. I think there are a lot of precipitating circumstances.

For now it sounds like you have a good bladder infection that needs to be taken care of. The signs of the bladder infection are abdominal pain, back pain, pain with urinating, fever and chills on occasion. Not catching a urinary tract infection and getting it treated can sometimes result in kidney infection so it pays to be vigilant with our symptoms. Good luck. Irish

[MAT51]

Thanks Irish. I think it's the Cellcept at higher dose that's triggered the UTI. I'm having my Amilaise checked tomorrow with full blood count and CRP to exclude pancreatitis. I was diagnosed and treated for a UTI sepsis 2 years ago but it turned out to be pancreatitis from Imuran. The doctor said that having had pancreatitis once could mean that I get it again.

Strangely I don't have burning or pain while peeing - and after a few years of microscopic haematuria this has cleared up too. I had a cystoscope 18 months ago and it was completely clear. But I do have a hot burning band of discomfort around my pelvis that I get often - plus flank, lower back,  groin and hip pain and horrible upper abdominal pain with total loss of appetite and nausea. My creatinine is a bit raised but I guess he thought it couldn't be kidney infection or I'd be in much more pain.

It doesn't work like this with me though. Doctors are always telling me I can't have things such as ear infections, pancreatitis, kidney problems etc (used to be Sjögren's before it showed up 100% in my lip biopsy!) because I'm not doubled up in agony, my teeth are not rotten etc. For ages they would blame my gallbladder for all abdominal issues but this was removed 2 years ago and showed no sign of inflammation - just one huge gallstone that was going nowhere! Then I was told I couldn't have a post op wound infection as no inflamed tissue around the wound. Within hours pus was pouring out under the bandage and before I could blink I was back in hospital with a burst abcess and blood poisoning! I'm obviously not very good at conveying pain!