Diagnosed with peripheral spondyloarthritis, not reactive arthritis, methotrexate, biologics

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My second post on here. Just wanted to share my experience and try and get some answers. I am 20 years old and nearly a year ago to the day I was admitted to hospital with an inflamed left knee joint and diagnosed with reactive arthritis. After 3 steroid injections, 4 months of sulfasalazine and lots of ups and downs my condition has only worsened, with both my Achilles tendons becoming inflamed as well as my left hip and lower back. I today received results from a new MRI and the doctors have come to the conclusion I am suffering from peripheral spondyloarthritis. Prior to this I was very fit, playing rugby up to 5 times a week. I now struggle to get out of bed in the morning. I have been started on methotrexate which I am told is very effective, however my doctor also said I would receive biologics in 3 months time if the methotrexate is not working. On top of this I am taking naproxen twice daily. I wondered if anyone with the same diagnosis/medication could shed some light on how effective it was for them and would like to hear some recovery stories. The last 12 months have been immensely difficult for me and I am finding myself very depressed.

Cheers

M

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  • Posted

    Hello M,

    It seems odd that the steroid injections didn't help if the cause is inflammation. My Ankylosing Spondylitis did not start peripherally but since I have had it for over 20 years, I began having peripheral joint inflammation over the last 8 years at least. However, injections of steroids always seemed to be effective but did not totally remove the pain. This may be off but my neighbor, an active guy in his twenties had joint pain in his foot and it would swell tremendously. He had great pains all over his body after awhile. Consulted with a rheumatologist and it turns out he had swollen lymph nodes and had a virus. Has your knee ever been aspirated, fluid removed with a syringe? That helped my knees when the swelling wouldn't go down. I would think the fluid from your knee could go to pathology then too although mine apparently looked normal so no pathology was necessary. I hope these ideas help. I am on a biologic, Cosentyx and that is helping me a lot.

    L

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    • Posted

      Hi there,

      The injections I received did all help, in fact there was a period of around 2 months where I thought I was making a full recovery, however they all wore off fairly quickly and the inflammation came back with a vengeance. I have had aspiration but to little effect. Thank you for the reply it is good to hear that a biologic is helpful. All the best.

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  • Posted

    Hey M,

    Understand that you are down a bit however I see that your doctor has chosen the right course of meds. Usually with methotrexate within a few weeks you start feeling better. Later it is both methotrexate and biologics.You are young and will be over it soon . Don’t worry and follow the docs advise. Try curcumin tabs that reduces inflammation. All the best ! 

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    • Posted

      Hi, thank you for the reply. I am hearing only good things about methotrexate so we shall see. It sounds like you have beaten a similar condition which is good to hear, perhaps age will be on my side! I will have to look into curcumin.

      All the best.

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  • Posted

    Hi M. Sorry you are having so much anguish. I too was totally disabled by AS, but have done the research and managed to put my disease in remission. I won't go into all my detail here, but will be happy to do so if you ask. Suffice it to say I was bedridden for a full year, with all of the lower vertebra in my spine fused together. I have now been off all medication for 8 full years (pain meds, biologicals, NSAIDS, etc.), and skateboard every day at age 54. 

    I found that arthritis for me was nothing more than the most prominent manifestation of system-wide inflammation due to poor diet. We literally dig our graves with out teeth. I began understanding what true healthy diet was, stayed with the diet religiously for a full year (but I saw positive results almost immediately), and began tapering off the meds as I felt better. I too am HLA B27 positive, but all my disease indicators are now back to normal (actually better than "normal" [wink] .

    If you can't pick it and eat it raw, isn't food. Bad food triggers inflammation in the intestines, with soon spreads throughout the body, which accounts for all the other symptoms AS sufferers get like low thyroid, insulin intolerance, etc. I eliminated ALL starches from my diet, even supplements and aspirin due to the corn starch they use as a binding agent, and stayed strictly with meats, cheeses, green veggies, nuts and low sugar fruits. I have learned alot since then. I added more foods back to my diet after all of my food allergies settled down, which is really what most diseases are.

    You will need to become a health expert, and I'd suggest following an holistic guru that truly know how to heal.

    Here is my diet:

    1. Gluten-free foods (no wheat, flour, barely or rye...creates gut inflammation and bleeding).

    2. Low lectin foods (leaky gut allows lectins entry into the body, which attach to the cell wall sugar molecules in every tissue in the body, which triggers the immune system and causes inflammation).

    3. Low sugar/glycemic foods (sugar is highly acidic, and is like throwing gas on the fire where there is inflammation).

    4. Balance acidic with alkaline foods (acids like meats and sugars are free radicals, which strip the cells of it's electrons causing tissue damage.It also forces the body to neutralize these acids by buffering them with minerals like calcium, which leads to soft bones).

    5. Avoid all processed oils, which become rancid very quickly and turn into free radicals. I only use cold pressed virgin coconut oil.

    6. Studies show that at least 50% of your diet needs to be consumed raw, otherwise your body goes into a state of leukocytosis (body does not recognize cooked food, and treats it like an infection by triggering the immune system.).

    7. 30% of your oils need to be omega 3 fats (flax seed, fatty fish, ect.).

    I personally eat 33% carbs, 33% protein & 33% fats using the above guidelines. My typical daily diet includes one can of sardines, tall blender of veggie smoothie with pea protein powder & fish collagen powder), one avocado, two eggs, cauliflower rice mixed with sea salt and coconut oil), tablespoon of almond butter and real honey (much honey is fake, so I use certified organic made in the US), cup of berries, and one sweet potato or yam (always go organic...boil cubes, drain add coconut oil & sea salt, then mash with a glass cup), beef patty three times per week), and chicken three times per week. I began adding legumes after I healed, but they need to be prepared correctly to neutralize the lectins (boil them for ten full minute). 

    Of worthy not is the Okinawan diet, the longest living population where the average 99-year-old is still fully mobile (and fertile!) and continues to harvest the fields. They mainstay of their diet (70%) is sweet potato, which interestingly is the only low lectin starch. Rest of their diet is 2% oils, 6% meats/fish, 10% rice, and some veggies.

    Hope to hear from you.

    Bobbie

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  • Posted

    20 years old is to young to have this ? Anyone in the family have this gene ? This is blood disorder with no cure , the complex immune attack by mistake the joints etc assuming is enemy or invasion, associated with gene HLAB27 plus inflammation who the blood tests are CRS CRP the two markers they use to see how inflame is your blood , I get that on my 24 years 1984 I am now 61 blessed disorder to remind us how mortal we are and fragile, hard to treat , in the 80 predisolone was the choice in the 90s they start study more the develop the TNF blockers , I do use sulphazaline buscopan plus Celebrex 100 it works in 2012 I was introduced to ENBREL 50 injection I was so alone subcutaneous, on October 2014 I found I have thyroid cancer I remove thyroid and I stop the TNF but I do start again as pain started , if cancer appears they do stop this family for 5 years , what work on someone may no work on me , I found remedial massage helpful walking they have different TNF blockers , caution should be used no to over suppress the immune , doctors know what this can do , I do feel pain on the hands etc peripheral joints , I realise they have spend billions of dollars for space exploration but no any cure for cancer or those conditions who make us suffer like AS or HLAB27 etc , just wondering why they do that ? Certain foods can aggravate this condition it run on families , The methotrexate no work on the spine period no the sulphazaline , Celebrex does work some how , for all this exist side effects but what we can do ? It hard condition , we need a magic pill we swallow and we get well from all this things , who wants pain , we may try all the TNF but exist a dark side to them , a good doctor will tell you the dark side , however what ever work on your body and blood type use it , what else to say 
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  • Posted

    I went down the rabbit hole trying to cure my disease through the western medicine school of thought, and eventually found that I was climbing the wrong tree. For me, health wasn't about turning over every stone and trying to figure disease within the complex biochemical pathways, and all the DRARD's and biologics did little for me other than reduce some of the inflammation. My cure came after I started understanding the intimate relationship between general health and disease. You got AS, then you got systemic disease that affects literally every tissue in your body. As soon as I got by blood inflammatory markers down to normal and the AS subsided, I soon realized that I needed to address a host of imbalances (digestion, adrenals, thyroid, blood sugar, etc.) before true health was mine. A great man once said that we dig our graves with our teeth, and nothing could be further from the truth. I had AS for 20 years, with several of my lower vertebra fused. Enbrel got my inflammation down to a reasonable level, with diet doing the rest. I have been off all meds for 8 years now, and skateboard everyday at age 54. Anyone who wants help is strongly advised to hire a functional medicine specialist. They are holistic in the sense that they look at all your symptoms and order complete blood panels to get a big picture of whats going on, then design a program based on nutrition and supplements. And I tell you it friggen works! Health for me included no refined sugars, no processed foods, no gluten (wheat, flour, rye, barely), low lectin, no processed oils, no GMOs, no pesticides, no hormones, no juice. I only eat wild caught and organic foods. If you can't eat it raw in it's natural state, it isn't food. My mainstays are sardines, salmon, beef, chicken, eggs, green veggies, herbs, limited nuts, limited low sugar/low lectin fruits (berries, lemon/limes, carrots, etc.), sweet potatoes and yams. That will heal your leaky gut and won't incite an inflammatory response. I stay away from all multivitamins, and only take quality Vit D3, K2 mk7, B6, B12. magnesium and fish oil. Diary is also highly inflammatory, so the only oil I use in food is virgin coconut oil. Will also need to keep an eye on alkalinity, tho the fresh veggies and magnesium will buffer most acids. Also need to go no fluoride (and non-chemical in general), because they steal electrons and thereby significantly lower the electrical gradient at the mitochondria, which means your cells are running on low amplitude and cannot function optimally. Sunlight is also important, as our body is designed as a solar unit. Direct sun exposure, and well as water or produce that has been electrically charged by the sun, is what charges our cells. UV rays run along the collagen fibers within the cell and directly charge the mitochondria in the exact same way as a battery, filling them with donor electrons to drive the system. There is no one cause of AS. AS is nothing but one symptom in a diseased system that is too ill to repair itself. 

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    • Posted

      Thank you for all of this useful information. I was diagnosed with peripheral spondyloarthritis 3 months ago after a misdiagnosis of RA 8 months ago (my first doc didn't bother to check my HLAB27 despite all RA blood tests being negative). I'm on methotrexate but intend to find a functional practitioner to help me address the root cause. My doctor does not find it unreasonable to expect someone to take a low-dose chemo drug for a lifetime. I love food. Are you able to enjoy the stuff you're eating now? Can you have a glass of wine?

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  • Posted

    My symptoms came in fast (not as tough as yours) a year ago. In hind site I had lots of individual spread out symptoms that never were connected to peripheral AS. On this site there are not too many people that begin with our symptoms and so quickly. When I first posted people questioned if I was misdiagnosed and didn't have AS.

    My initial symptom a year ago was sharp, terrible pain in the top of my hand if I used it. Putting on boots, changing sheets on my bed etc. After a month I saw an ortho doc and after two different braces with no improvement they did a MRI and the only unusual thing was an area of inflammation in the top of my hand. While dealing with my hand my left heel started hurting making it difficult to climb stairs, walk at a normal gate, etc. I didn't seek medical attention because I was convinced I'd again get the same non-diagnosis. While suffering the hand and heel issues my right knee became sore and very weak. I became very weak. I could no longer exercise on the treadmill. Shopping became too difficult. I saw my Internal Medicine doctor and she did blood work and found my ANA suggested an auto immune and she sent me to a rheumatologist. After taking my history and doing a physical exam she diagnosed me with Entheses. It took more tests and longer to diagnose me with AS/Entheses.

    I'm currently on Enbrel weekly. It took 10-12 weeks before I had relief. I then made the mistake of trying to go skiing (peer pressure for my sisters birthday trip) and did okay initially and then really struggled to get down my last hill. That was it for me. I wont be skiing again...very sadly.

    I will say that I've never been one to jump on the band wagon for changing food to heal your problems. I'll even admit that when I see the posts that go into great detail I tend to scan over them.... However, for the three months prior to the holidays I was "dieting" and eating more fruits and veggies, less bread and pasta, hardly any sugar. I've lost 26 lbs. This weight loss happened to be at the same time as reaching the 12 weeks of Enbrel. Regardless I was feeling much better, not normal but better. During the holidays I've had more breads, sugars etc. I feel horrible. I've not put any weight on so I've not ate in excess...just had sugar when normally I wouldn't. It's only a guess. It could be the cold, after all it was this time of year that it all began in 2017.

    My pains??? In order of pain...knees, heel, shoulder, back, ribs, top of hand and feet. When I stand up after sitting for a period of time, say for dinner....When I get up I have to do it very, very slowly, make sure my knees will hold me and then slowly proceed. The further along I get the better it I do, the less it hurts.

    Prior to a year ago I was a healthy individual. I've never had knee, heel or shoulder problems in the past.

    I hope this (way too long) information helps you feel not alone. Please continue to share your journey as I think it will be very help for the ones of us who don't have the typical AS.

    Happy New Year

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    • Posted

      Happy New Year Diane and thanks for the response (was not too long). I think our situations are similar. Looking back, I think the last year’s aches, pains, weakness, and flexibility issues may have been due to this condition, rather than sports (ice hockey) and working out as I originally thought. The methotrexate has helped a lot. Before I couldn’t pull a fuel dispenser nozzle lever. Now, after 3 months on methotrexate and carpal tunnel release on each wrist, I can do push-ups again. My pain is mostly in my hands/wrists but also left hip, knee, and ankle and maybe neck and back. However, since my diagnosis I’ve been swimming and going to cardio and other classes at the gym – I ALWAYS feel better after working out or simply moving around.

      My rheumatologist seems content to simply address my symptoms by prescribing more drugs. I do not accept this and found a functional medicine practitioner in my health network (MD also) and together we are researching the root cause of my immune system imbalance. She and I have discussed my lifestyle and health records and have a plan of investigation. I‘ve been reading everything I can get my hands on and taking seminars on functional medicine. Some of my prior tests reveal a potential allergy problem. Additional traditional and non-traditional tests can narrow down other potential problems too. I plan to do an elimination diet, which you’ve kind of already done - I am impressed by your sugar diet and results! I hope you consider finding someone to help you investigate and ultimately control your condition. I’ve not ruled out a bit more ice hockey before I decide to hang up my skates and I hope you don’t give up on another couple runs down the hill!

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