Another autoimmune disease :-(

[aussie mum]

Dear Friends,

As you are all aware, these autoimmune diseases run in packs and I've just been diagnosed with another one. Ankylosing Spondylitis. (hard to spell & say) It's a type of inflammatory arthritis that can eventually fuse your spine. Great 

I have had back pain for many years, with problems also with my shoulders, elbows, knees, hips, ankles, rib cage, heel spurs etc. After trying physio, chiro, massage & years of movement exercises, our local sports doctor finally took some blood tests that showed something and I was off to a Rheumy.  (my GP had previously refused to send me to a Rheumy). 

A couple of MRI's and Xrays later I find that I have grade 2/3 damage and it should be serious enough to qualify for government assistance to pay for treatment by really expensive injections - TNF inhibitors also known as Biologicals.. (I'm still waiting for that paperwork to come through)

Although I'm not really surprised by the diagnosis, I have been in a bit of shock that I'm bad enough for injections. There is one particular gene they test you for with AS, typically I'm negative. As with many other diseases, you can test positive and not get it, or test negative and get it (that's me).

You need to remain as active as possible and sitting down aggravates the Sacroiliac joints, which is the main area of inflammation used for diagnosis. That's more "great" news as I work in an office job and have to sit at a desk all day.

I'm currently in the process of getting many different immunisations as this medication lowers your immune system. I'm interested if anyone has any experience with AS or the TNF inhibitors. I am going to be taking Simponi which is injections every 4 weeks. It will be interesting to see if the medication calms my dry eyes and mouth which is so far not diagnosed as anything.

Aussie Mum

[jazzlover]

UGH.. sorry to hear. I am afraid I will one day be diagnosed with this. My cousin has it and we have all the same medical problems. I do have plenty of pain in my SI joints.

So far all tests are negative. Which blood test did you have? I know they can also use an MRI to find it.

I think several people here are on biologicals. I would be pretty scared of them, but a fused spine is no cakewalk either. Keep us posted on how you're doing!

[SjoDry]

Hi Aussie Mum,

So sorry to hear that you have added another AI disease to what you are already experiencing. I know that we all have a tendency to get used to whatever is thrown our way on any given day...but it is still disheartening to have co-morbid health issues. I have had 2 spine surgeries and I think back pain is the worst (especially in the area that you have it). I hope you are getting some good information and are able to put together an effective treatment plan. I hope the injections are helpful to you.

Stay positive. 
SjoDry

[aussie mum]

Thanks for your replies jazzlover & sjodry.

I had an elevated CRP, ESR. Negative RF (which I think is important to get a AS diagnosis)
The main blood test they use in diagnosing is called HLA-B27 but I tested negative to that.

Apart from my symptoms, the key to my diagnosis was the MRI which showed inflammation of the Sacroiliac joints and the damage that showed on a normal Xray.

I had to go through the process of trialling all the anti inflammatories. While they did help with the pain, the side effects we not good, my very sensitive stomach is still recovering - so they're not too good for you either.

I'm remaining positive and hopeful of a good result. I'll keep you all posted.

[Lesley_x]

I'm really sorry to hear of your diagnosis. Try not to be scared of the biologics, they look horrible on paper but plenty of people are on them and doing well.

If you don't mind me asking, what are your symptoms? I'm quite worried about this condition but my rheumatologist blames all my back pain on sjogren's which is unlikely imo.

[slccom]

I'll join the chorus of sympathy. Let's hope your AIs will settle for just one friend!

Sharon

[aussie mum]

Thanks slccom & Lesley_x, of course I don't mind sharing my symptoms.

Looking back (I turn the big 5-0 this year) I have had a lot of pain and injuries that can now be put down to AS.

Firstly there is the lower back pain, especially when you pivot or tilt your hips. The rest of my back hurts all the time too. I also have pain in my shoulders, elbows, central rib cage, hips, knees, ankles, and one very sore toe. When I lay down on my back I need to bend by knees as it is too uncomfortable to keep my legs straight. Also the random injuries with no obvious cause, Tennis elbow, bruising of bone on my knee, heel spurs and plantar fasciitis. many times I've been limited in exercising because of a sore ankle or knee.

Of course there's fatigue too.

In hindsight, one interesting thing.....I was told by a physio about five years ago that when I bend to touch my toes, I was missing a curve in my spine. He wasn't sure why. I think now we know.

One of the main points that I haven't mentioned yet is that the pain and stiffness is WORSE after rest. Waking up in the morning and getting moving is bad. I do my movement exercises and have a long hot shower to help loosen things up. Long car trips, or sitting at a desk all day have the same effect, I hobble around worse than my 97yr old grandfather.

Hopefully I'll be approved and will start to feel better soon.

[warmwaters]

Hey there .... I was just diagnosed with axial spondylitis about 2 months ago, which is a disease similar to Ankylosing Spondylitis.  It's also called reactive arthritis. I am not as far along as you are in the problems with my joints.

My rheumy is treating me with doxycycline (an antibiotic) which can be effective with both diseases (time for a google search). Strangely, doxycycline can also act as an anti-inflammatory. So it's worth exploring with your doctor.  Of course as I am not a doctor, I'm not sure if it's appropriate in your case.

If you give the names of the biologics they are likely to use, I'm sure people would be willing to help out with what their experiences have been.

I can't do immunosuppressants, as I seem to get infections very easily.

[lori]

First ,

Im sorry you have to add one more on the list- i know the feeling!!!

second, Dont panic biologics are a rel life saver when you get the one that works for you

the first injection of humira and in two hours i had total relief from RA stiffness/pain.

i inject every other week and take mtx once a week- makes huge difference in pain and in fatigue- feel better than before all mydxs....

humira is a good biologic- but everyone is different so praying you find your med soon

lori

[aussie mum]

Thanks for your thoughts lori & warm waters, looks like we all have been on a similar journey.

Warm waters, it's interesting you mentioned the antibiotic, I think it is also used as a preventative for malaria. I wonder if it works in a similar way to Plaquenil. My Dr never mentioned it, initially there was some thought of a sulfa medication but I think when I met the criteria for the biologics he thought that was the approach we should take.

Lori, I was given the choice of which medication to try. As they are all injections, it was either weekly, fortnightly or every 4 weeks. I thought it best to try the longest gap first, as that would make it a bit easier if I was lucky enough to travel as that stuff has to stay refrigerated.

So once it's approved.... I will be trying Simponi (Golimumab).

Thanks again for all the advice.

[mshistory]

I'm so sorry My friend has AS and read about some sort of carb free diet to help with the pain. She's not one who normally buys into diet fads but, being a doctor and having read about it in the Journal of Rheumatology (here in the U.S.), she decided to try it. She said it has made a huge difference in the level of pain she experiences. It has not helped with her fatigue, but it may be helpful in addition to the TNF blockers you will be getting.

[aussie mum]

Thanks for the advice mshistory

I have read about the low carb diets but it is really interesting to read first hand reports of how it helps people. It would be a major diet change for me but I can see it will probably be something I will have to do. I can't imagine not having cereal for breakfast, a sandwich for lunch or rice or pasta at dinner. 

I hope you can still eat chocolate 

[aussie mum]

My approval for Simponi has come through, so I will be starting soon. I have one more immunisation to get and then I have to make an appointment with a nurse from the Simponi support staff who will come to my home for the first two needles and teach me to self inject.

It is a bit daunting, but there are millions of diabetics out there that have to do this every day so I best toughen up and get on with it.

[jazzlover]

Getting grains out of your diet will help most who have pain .. esp gluten.

If anyone is on an antibiotic long term, be sure to eat a diet free of sugar and white foods and take tons of probiotics.

[bjnc]

I have psoriatic arthritis (autoimmune) and have had it for about 25 years.  I have been on Methotrexate for 11 years, Enbrel (another TNF blocker) for 4 years.   Both of those I had to stop because my white blood cell count got dangerously low, and I got sick a lot.  However, my rheumatologist had told me that I have an unusual tendency for that to happen, so don't worry about it; they will monitor your blood counts for you.   I'm now on Humira, and it is working wonderfully for me.  I have to take it every week, which is a higher level dose.  I also take Sulfasalazine and Mobic.  The three combined are what make me functional right now.  I do okay, except that I can't do any housework, yard work, or lifting anything, or I pay dearly for it, in my back and sacroiliac joints especially (where a lot of damage is in psoriatic arthritis also).  It is bad enough that I don't think I'd be walking without all these meds.  I tried going without meds several years ago, and I did have difficulty walking and I did not realized until then how bad my arthritis had gotten. 

So I would say that the meds, and especially Humira, have given me functioning joints and a functional life.  I would encourage you to go ahead with the Simponi, and hopefully it will help you as well as the Humira has helped me.  BTW, I did a 6 month trial of Simponi before Humira, and the Simponi did not help me for some reason.  If it doesn't help you, try another TNF blocker, and it may work better.  I'm sure it's just an individual thing.

Another reason to take these Disease Modifying Antirhuematic Drugs (DMARDS), of which Simponi is one, is to prevent damage to your joints.  Both psoriatic arthritis and ankylosing spondylitis can cause damage to your joints, and the DMARDS can prevent that. 

For me, these drugs have not helped with the fatigue or dry mouth. (I don't have much trouble with dry eyes).  I sure wish they had helped, but that hasn't been the case for me.

Hope this helps.  Feel free to ask any more questions.

Becky