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Living with Psoriatic Arthritis (PsA)

About the Greetings and Introductions category


#1

If you are a new member, sign in and say, “Hi,” introduce yourself, and share your story. We are not a clique. We are not elitists. We are a group of fellow PsA sufferers, who are all in pursuit of improving our lives and better controlling our disease. We have all become friends and partners. Start your forum experience here


#2

“Hi!” I am a 70 year old female married for 53 years (since1964). In 1990, I started having strange falls where I would just drop and sustain rather severe injuries. At the same time, I had to stop running and walking due to very sore feet. I was sent to a rheumologist that wrongly diagnoised me with Lupus. When the terrible deformities started in my now ‘sausage like fingers’, and I had a signifigant rash on my arm, the diagnosis was changed to Psoriatic Arthritis. I was given Methotrexate instead of Prednisone, and the deformities stopped. However previously, the Prednisone seemed to control the drop falls. But,the added Methotrexate seemed to control falling also.
About 2007, I started to ween off of all medicine (except seizure meds) due to slightly raised liver functions. The drop (maybe seizures) started up again. I went to a new neurologist and a new rheumologist at KU and am getting some answers. I was put back on Methotrexate (couldn’t tolerate the Metho substitutes) and Remicade and have started weening off of the seizure medication. More specific tests are being done at the moment to see if there is a correlation between seizures and PA as the correlation is in Lupus. I had to add the Remicade because of increased pain but am having swollen, non cancerous, lymph nodes in my throat (don’t know if there is a correlation between the two).
My life is full and happy. My attitude is that that disease does not interfere in my life or interfere with what I want to do (within reason, of course). I exercise but so differently than running and being extremely active, which is alright with me. Chronic pain follows me but does not define me. My best to all of you. If anyone has similar symptoms, please contact me.


#3

Hi, just getting started on belonging to a group!


#4

Hello,
I have been diagnosed for two years. I am currently on MTX injections, leflunomide, and Humira. Enbrel used to work, and then it failed.

The Humira doesn’t seem to really be working. We are giving it to November, and if it still doesn’t work, we are going to try Remicade.


#5

Hello! It’s nice to be here :slight_smile: … Help!!! Would love your thoughts. I’ve had an unidentified auto-immune disease for 20+ years. Rheumy years ago told me to tough it out until I couldn’t anymore. 2 NSAIDs a day no longer keep down the swelling and pain and swelling in my ear canal has caused hearing problems 4 out of past 12 months. Chronic inflammation has moved throughout my body - have had sausage toes twice. Have chronic pain bilaterally all the time in my palm/thumb joint, pointer and middle fingers. Sometimes the hand joints become hot, red and swollen like bee stings. Left knee has been swollen now for 9 months; left shoulder has been swollen now for 18 months; and now having pain in both hips, spine and neck. Through the years, inflammatory #'s have been occasionally high; uric acid levels were high once; ANA pattern was speckled twice; but no diagnosis. Last week, after I begged my primary care doc to re-test me off all NSAIDs for a week, I finally turned up with an RA factor of 31.

I joined this group because I’ve had evzema or psoriasis INSIDE my ears for 12 years. Prescribed steroid cream keeps it controlled. Read recently that the huge bright red burning rash I get occasionally under my bra line could be a form of psoriasis. After reading about PsA I tried some of the cream I use in my ears on my bra line. Rash went away immediately! Last spring I was put on Prednisone for 8 days and EVERYTHING cleared up. My ears improved and I could even think more clearly. Sadly…that only lasted about two weeks. My physician has been reluctant to put me on Pred. again because I had severe depression soon after. Rheumy has dragged his feet because he wants the depression addressed first. I have two other physicians (ENT and gastroenterologist) who have found mild to moderate swelling everywhere (gut, stomach, esoph., and sinuses (non-sinusitis).

I’ve heard that both RA and PsA can affect organs. Is this true? I was told years ago by my Rheumy I might have lupus. My Rheumy says it’s unlikely. I’ve had thyroid, uterus and ovaries removed and rectum and bladder rebuilt because of cell over production (prolapse). I don’t want to lose my hearing. Thank you for your thoughts.


#6

Hi, I am a 56 year old woman and was diagnosed with PsA about 20 years ago. I am really struggling at the moment and don’t seem to be getting anywhere with my meds have been on so many different things I cant remember half of them. Over the past 5 years or so I have been on several different immunosurpressive drugs, sorry about the spelling. The latest one I am on and as far as I know the newest is Cosentyx which I inject every 4 weeks. I have even been through chemotherapy to try and help but nothing has helped I am at the stage now where I want to give up and tell the doctors enough is enogh. I am living on MST and oramorph for break through pain killers it just seems never ending. Sorry for all the ranting I keep it in at home and feel that maybe this is somewhere where I can talk to people who will understand how things are. Thank you for reading and accepting me to your group.


#7

Hello, found this site after reading various forums. Been dealing with psoarisis since age 12. Age 40 now and developed swelling with aching muscles upon use, which lead to a diagnosis with psoariatic arthritis. I have tried at least 5 biologics within the last year and a half, along with methotrexate, prednisone, and otezla. Havn’t seen much success. Anyway, this disease is a disaster. I look forward to participating and learning from fellow people dealing with this.


#8

Hi, Let me introduce myself. My name is Ross and I have been diagnosed with PsA for about six years, having been originally misdiagnosed with RA a year before. I am 55 years old and live In Hertfordshire UK.

I have been on Hydroxychloroquine with Methotrexate (made me sick), with Leflunomide (affected my liver and kidney function), with Sulfasalazine and then on Sulfasalazine alone. About two years ago I was prescribed Humira, but have been struggling with very low Neutrophils, so have been on and off to level the Neutrophils, whilst having some relief from Prednisolone.

I was changed on to Cimzia about six months ago and had decent blood results for the first six months but have just had another poor result and I am having to suspend my Cimzia. I had thought I had left the Neutrophil problem behind with Humira.


#9

Hi, I’m 56 and I was diagnosed 1 year ago with PsA. I have very little psoriasis, but I have major joint involvement. I was diagnosed after spine surgery following a car accident. I felt like I had joint pain in knees and saw a knee specialist, shoulder and saw a shoulder specialist, wrists and saw a neurologist and a hand doctor, and then I noticed my finger joints were swelling and hot. I decided that somebody needed to look at the whole picture. The spine doctor said I needed blood work. After the blood work they found I had HLAb27 and not Rh factor. So given the small amounts of psoriasis, it was decided it was PsA. I went on prednisone and methotextrate. It was a six month nightmare. I was very sick from the methotextrate and spent the day after every shot in bed and just began to feel “normal” by the next time I was due for a shot. So at six months, the rheumatologist decided I was a failure on methotextrate. Yay! I then got pneumonia and gastritis and spent a week in the hospital. I’be lost 40 pounds - some I could afford to loose - it might be going a bit too far now. I am on Otezla now. At first it was a fight with insurance but finally they have approved it. However, it seems to be exacerbating my IBS. I feel like I can’t win. Not fun. I also have depression with two deaths in my immediate family in less than six months. I often want to hide under the covers and not come out. I don’t leave the house much, the IBS is too bad right now, and I just feel safe and secure here. I try and it’s uncomfortable. I am working with a hospice counselor…but I think there’s so much more. Are other people overwhelmed by the frustration of PsA? Is everyone tired? What do you do to cope with the fatigue?


#11

Hi I’m a newbie from new Zealand. I’ve had psoriasis since I was about 25. I noticed some changes with my normal psoriasis last year when I started having a flare up after getting sunburnt which became psoriasis and about the same time any scratches from roses or my cats did the same. I noticed at about the same time I started having some pain in joints in my left hand. It wasn’t until I spoke with a dermatologist where it was suggested maybe I had some psa symptoms. She started me on mtx and referred me to a rheumatoid specialist. Now I have developed pain in my right hand elbow and have a trigger thumb. I have lower back pain and pain in cervical spine. I suspect it’s all related but still waiting for an appointment with rheumy. I’m trying not to feel like a hyperchondriac which I guess it’s the reason I’m here to talk to others and learn about other people’s experiences. I look forward to chatting to people here and hopefully feel a bit better.


#12

I’m a 73-year-old woman who has lived with various physical ailments for decades. The main ones were: hypothyroidism (I take prescription thyroid medication), asthma, allergies, sleep apnea, obesity, fibromyalgia, chronic fatigue, osteoarthritis, Cogan’s corneal dystrophy, weakening muscles, an extremely dry mouth and throat, chemical sensitivities, and damage from a knee replacement that went wrong. That knee got infected and I had to have three more operations on it. I had to take IV antibiotics between each surgery. That seems to have played havoc with my intestinal flora. I have been married to my kind and loving husband since 1963. We have three grown children and four grand children. Our oldest daughter is temporarily living with us. I try to eat a healthy diet, avoiding sugar, grains, processed foods, and dairy. One consequence of this diet and the supplements I take is that I have very little pain. I used to weigh 400 pounds many years ago, but I have stuck to my healthy eating and now I weigh 260 pounds. I am still very gradually losing my excess weight. I was diagnosed with psoriatic arthritis on August 14, 2017. My rheumatologist said that the anti-inflammatory diet I have been on has been masking the symptoms of my psoriatic arthritis. She said I had probably been misdiagnosed with fibromyalgia. But my diet has not stopped the progression of the crippling. I can barely use my left hand, and the right hand is weak. Some of the upper vertebrae of my spine have fused, leaving me with a permanently stooped posture. I meditate once or twice a day. I don’t get much exercise because I can’t walk well. The replaced knee swells up if I use it very much, aggravating the permanent edema in my leg caused by the surgery. I had the other knee replaced as well, but it turned out fairly well.I used to swim, but I became sensitive to the pool chemicals. I started taking Otezla the day after my diagnosis. I would like to stop the progression of my crippling condition, and I really would like to have more energy!


#13

Allo! My name is Nadia and new member of your blog. The reason why I choose this blog is after reading a lot of different ones, - and all are very good - I found that your’s is more…may I say comfy? :slight_smile:
I’m 52, french canadian, working full time and got PsA for about a year now. I do not have psoriasis myself but members of my family do.
Curently, I am on 20 mg of Methotrexate and 60 mg Otezla. Before that I took Plaquenil (which I became allergic too).
I am not one who writes often but I like reading you all very much. I’m trying to find answers to my questions and doubts with what’s been writen before so not to ask you questions that you would have already answer.
And well…pardon my french in advance for english is not my native language.
Thank you again!