Odd Onset Symptoms - question on biological & infusions

[Vmitch]

I am new here so bear with me HAS ANYONE ELSE HAD THE STRANGE ONSET SYMPTOMS LIKE THIS? I was diagnosed with RA 5 yrs ago not with joint pain or the normal things you think about with RA. I was nauseated then had projectile vomiting come on very abruptly. Along with that one 2 occasions it hurt bad to walk (legs didn't want to work) and needed assistance. 3rd time it happened I projectile vomited again and sat down on potty. THIS TIME I COULD NOT STAND UP. The muscles in my legs didn't work, as if paralyzed. I had to finally slide off and scoot with arms only with a towel I pulled down. I scored to the bedroom, which was no easy task. I tried different way to get up FOR 4 LONG SCARY HOURS, I couldn't do it. Without going into any trivial details I slapped my phone off the bedside with a towel table and called a friend who had a key to my house. When she got here she couldn't believe what had happened to but the fun began trying to get me somewhere else. A 6" stool was first by putting her back to mine once there then with my arms helped her get me on a chair with wheels. She had to push me, no I couldn't even push backwards myself, to the couch. She begged me to let her take me to ER but I had been before wth dx of reflux and maybe fibromyalgia. So I convinced her that'd I'd go next day if I couldn't walk. She gave me my RX to sleep and a pain and left with my insistence. The next day I could "scoot my feet" but that was a far cry from the floor. I went to rhuotologist he ran labs and oh my 😱. Now I am just learning about these numbers and letters my CRP was 265, normal is 0 - 5 and RA numbers were very elevated. The CRP that high meaning infection or inflammation he sent me for an ultrasound of my abdomen which came back negative.

So from there I was diagnosed with RA. Ask him why RA? He said my numbers were elevated but you have a little swelling and I said where? My ankle Of what I thought was "fat" even though I'm not a happy person.

So was put on plaqunil for 2 years, purple bruised my arms very badly, Tried MTX, methotrexate, pills made me sick so back on plaqunil but the pain finally started and got bad in toes. First time for pain in a joint probably two years into this after floor incident. So because of my toes started I MTX injections 1 x weekly I'm still on that but my feet are hurting worse. I ask my internist what would happen if I didn't take any medicine for RA as I hurt anyway. He said they would be hurting a lot more and the swelling would be worse. The meds slow the progression down. Now on my toes I can see damage done just in the last year

QUESTION: So a biologic I think is next, which ones have you tried or worked best for you? Just heard such negative things from people getting cancer on Humira, I know 2 myself and how they lower your immune system and are more susceptible to diseases: viruses. Does anyone have any suggestions one over the other? What do the infusions do? I would like some feedback on this as I just iced my toes elevator them and they're really starting to cause me problems. I have painful bunions when they swell and knuckles on both pointing fingers too. Thank you. I'd like to on onset if you'd heard of anything so strange? I heard RA can effect the muscles, I guess that's true.

[sylvi]

Sorry your suffering likie this. I am sorry i can't answer your question,so i am sending you a gentle hug instead.xxxx

[Hidden]

Hi

I am sorry to hear that you are having such a tough time at the moment and hope that you can find something soon to improve things for you.

Having worked for many years on the NRAS helpline I been in contact with many people who have RA, and would say that, in my experience, this is a disease that is very individual and the onset varies considerably from one person to another- we often say that for some, the symptoms hit them like a steam train whereas for other the symptoms start much more slowly and insidiously and a whole range of other scenarios in between.

Now that you have a diagnosis getting the best treatment to get your RA under control is the most important thing and having access to the more targeted biologic therapies is a positive step. We are based in the UK and access to biologic therapies is determined by the NICE guidelines. Currently the available biologic drugs fall into 4 groups - those that target TNF, others that affect IL6, the B-cells and the T cells - you can read more about all of these drugs on this link nras.org.uk/publications/bi... (this booklet is currently in the process of a review but still relevant).

In the UK and many other countries, data has been collected from patients who have been prescribed these drugs and the results from this are published - you can read more about the British Registry and its findings on page 33 of the above mentioned booklet.

In regards to the safety of these drug and in particular the cancer risk, the information on page 34 will be of interest to you.

It is almost impossible to determine whether a drug will or won't work for you or if it will cause side effects as people react so differently but you can take comfort in that you will be closely monitored. Weighing up the risks and benefits of treatment is always difficult but the evidence very strongly suggests that for most people, medication is the best way to get your RA under control.

Best wishes

Lorraine

[Vmitch in reply to Hidden]

Thank you for your time and that information I have saved that link will look at it on the Biologics.

[Damaged]

Wow, so sorry you are going threw this. The inability to walk is what led to my diagnoses. My Rheumatologist says I have had this RA at least ten years. July 2015, my husband drove me to GP because I could barely walk or lift arms. My CRP was 85 so I can only imagine how bad it was for you at 265.

I have been on a solid year of med changes. It can be very frustrating but unfortunately it is unavoidable. The complex nature of this disease is that it does not affect people the same way. The goal is to find a team you trust. I am currently off Biologics and DMARD's for at least six weeks due to Pityriasis. I have a long history of drug allergies and sensitivities which pose an added challenge.

I have chosen to have genetic screening done to facilitate this process. The key is finding doctors who work with you. I must say I lucked out. I absolutely love my Rheumy. She is young, current and open to my full participation. We work together to find a solution. I trust her with my life, literally.

[Vmitch in reply to Damaged]

Thank you I feel like I'm not alone. You were the first person that I have "talk to" that is been on able to walk or had difficulty walking. 265 I was on the floor for four hours and could not move my legs they were paralyzed was horrible and scary. I asked my friend how I got up into the computer chair the larger chair with wheels and she said I pulled up on the poster of the bed and help her. For some reason there are moments that I can't remember during that ordeal. Thank you again for that. What's the difference between a

DWARD and a biologic? I guess I can look it up is plaqunil and MTX a DWARD? Which Biologics have you used and you found to help you the best? Have you tried are considered infusions? I guess I need to do some more research. The thing is I read I'm not sure what I'm reading 🤔

[Damaged]

'SI was diagnosed July 2015. In addition to CRP, my Cyclic Cittrulinated Peptide was 300, 3 is high. My RF 23 and also had a positive nuclear AB which is not RA. It is likely caused by a connective tissue disorder.

Since my first visit I have been to a couple of Neurologists, Cardiologists, Opthomologists, Physio Ect... DMARD's Disease Modifying Anti Rheumatic Drugs like Methotrexate, Paquenil, Lefludamide, etc I am drug resistant or sometimes referred to as extra articulate manifestations or comorbidities. In other words, mine is systemic. It affects everyone in very unique ways. That is why it is so difficult to treat and identify.

I have tried Humira, a TNF inhibitor and Orencia which is a TCell inhibitor. I am currently on a sonatina due to reactions. I developed Pityriasis Linchnoids in it's acute form. It is clearing up so it appears to be drug induced.

There is a lot of information available but be careful. Trust your doctors. I also trusts others who are living with this disease. Most people find a combination of drugs that work for them. It is frightening but the option of no treatment is far more frightening to me. We may not yet have a cure but it can be managed. Welcome to my odyssey lol

[earthwitch]

Does sound an odd way to get an RA diagnosis, and even if you do have RA I would wonder if there was something else going on as well. Interestingly I had projectile vomiting just prior to my coeliac disease diagnosis (when my gut was so badly damaged by years of undiagnosed disease that nothing much was getting past my stomach at times, and would just come back up again). Might be worth having a chat with your GP to see if all your symptoms can be explained by RA, and whether it might be worth another referral to a different kind of specialist.

As far as Humira and cancer goes, the lifetime risk of cancer (without Humira) is actually quite high these days - something like one in three people. The number of cancers triggered by humira is actually very low. Antitnfs as far as I know are most likely to slightly increase the risk of blood borne cancers (leukemia, etc) but not solid cancers, and children and adolescents are the highest risk groups for getting antitnf triggered cancers. BUT - the amount the risk is increased in ordinary adults who don't have any specific risk factors (genes) for cancers, is only a very small percentage more than the risk of getting a cancer anyway. So the people you know who had cancer while on Humira could have been totally coincidental and they would have got it anyway - especially if it was one of the solid cancers, which generally aren't related to antitnfs. If you are googling for statistics on this, ignore anything published more than 5 years ago - the understanding and research on these meds has jumped rapidly in the last few years, and anything written more than about five years ago is likely to be way out of date, and based on much less available information than they have now.