Is anyone familiar with this drug or perhaps has taken this drug?

I had a long discussion with my rheumatologist about my recurring issues with joint pain and mobility. I told her that I have been on Plaquenil for 18 months and do not want to keep going on and off prednisone especially after it caused me recent pancreatitis. She said it was safe for my liver and kidney. She suggested adding Orencia and gave me material to read on the subject. If I accept that and if my insurance will pay I would start next month.

I would love to know your experience.

I have been reading up on this as my rheumatologist has mentioned it to me last time i saw her. I have 2 more weeks to decide but i think i am going to try it. I will try and remember to let you no how it goes

FYI- Did you check the side effects????

The one that REALLY caught my attention was that it can cause Cancer (malignancies). Certain kinds of cancer have been reported in patients receiving ORENCIA. It is not known if ORENCIA increases your chance of getting certain kinds of cancer. Make sure that the doctor(s) don't have a financial of interest with the following company. More and more doctors are getting caught with conflict of issue when it comes to drug dealing. They make hundreds of thousands of dollar per year to push the drug(s) I only found out when my doctor made the news!!! Could you only imagine?? Fear and Greed can make humans do crazy things. Just be careful....please.

That's kinda scary.

I found this information on http://www.orencia.com.

Thank you for your thoughts confused. I can understand that a medication like this will bring out strong feelings in some people. I have read the material my doctor provided. I am trying to make a decision. I already have liver and pancreas involvement and I am bordering fourth stage kidney disease. Many treatment options are eliminated for those reasons. I just found out that it might be the Plaquenil that I am allergic to. I have stopped that.

I live with chronic episodes of myositis which triggers neuropathy and tremors.i have added things like krill oil and milk thistle but I am searching for options where I have some quality of life. I am a single parent with no support network. My son is a high school junior who has had to shoulder the burden of looking after his sick mother. Today he lost an opportunity to go to a college open house because I was unable to take the trip into New York. I want to see him graduate high school with his friends and want to see him go away for college so he can have a life. If I can establish some kind of quality of life for myself this might be possible.

So, I am hoping that people understand why I am looking at this drug as a choice. If you were in my position what treatment alternatives would you choose?

Yes, there does seem to be a possible increased risk of certain types of cancers. But that increased risk is also present just by having an autoimmune disease. My understanding of the increased risk from the biological is not significant, but you can certainly do the research. For me, going on a biological was necessary. I have psoriatic arthritis and Sjogren’s, and was no longer getting good enough control without a biologic.

Thank you for your thoroughness.

I have been on Plaquenil for 18 months mostly without incident. My eyes have not been affected. A few months ago I began to get rashes always in the same place, my left lower leg and left arm. I had a skin biopsy done by a derm that I didn’t have much confidence in. She simply sliced off a piece but it came back as a possible drug reaction. I told my rheum but she did not think the report was accurate because of the way the biopsy was performed.

The rash went away and reappeared last month. I went to a well recommended derm and he did a punch biopsy in the area of the rash and it too came back came back drug reaction. I am on three meds. I don’t think it is my b/p med which I have been on even longer. The other two are Plaquenil and pilocarpine. I only use the pilo prn so I eliminated that. That leaves me with suspect number one, the Plaquenil. I stopped it and sent a message to my rheum.

That leaves me without any meds to treat the Sjogren’s. Hope I can live with the consequences.


I also read that info and am aware. It has been on my mind. I have asthma that gets triggered mostly by environmental stuff but also whenever I get a cold it has a nasty tendency to drop in for a visit to my lungs. So, this is a concern for me with this drug.
I hope to see my trusted primary today and talk to him about it.i have other issues such as recurrent abdominal pain and weight loss which my rheum thinks but can’t confirm is AI pancreatitis. One of my enzymes remains abnormal. I am just a mess right now.
Thanks for looking this up. I will let you know what I plan to do.

Kaz said:

To be honest I would be very careful taking this drug if you suffer from chest infections, or infections as a rule. I say this because there has been fatalities in trials for people taking DMD’s and this, and one of the drugs is plaquenil that was used in the trials - hydroxychloroquine (plaquenil). Not sure which DMD’s were implicated in the fatalities but would be wanting to read the research paper first before I considered it. But that’s just me as I am more cautious when it comes to medications because I have had some serious adverse reactions to medications in the past.

What is also interesting is that musculoskeletal pain is a common side effect, yet you are being prescribed this to lessen it? I have attached the full presribing information for you, but have copies and pasted some information that is of importance.

Do you take high strength fish oil? If you don’t and are not on blood thinning medications, consider taking high strength (no less than 1gram EPA content) of fish oil. Fish oil is broken into EPA/DHA. The EPA side is what is needed to be 1 gram or more to reduce inflammation. I would be more inclined to take fish oil for a good 8 weeks at a high dose (always read the bottle for content as most claim high strength and are far from it. Usually liquid fish oil is better) and see how your inflammation is then before trying a fairly new drug that has some pretty serious adverse reactions, especially if already on DMD (disease modifying drugs).

Infections. Serious infections, including sepsis and pneumonia, have been reported in patients receiving Orencia.

Some of these infections have been fatal. Many of the serious infections have occurred in patients on concomitant immunosuppressive therapy which in addition to their underlying disease, could further predispose them to infections. Doctors should exercise caution when considering the use of Orencia in patients with: a history of recurrent infections; underlying conditions which may predispose them to infections; or chronic, latent or localised infections.

Patients who develop a new infection while undergoing treatment with Orencia should be monitored closely. Administration of Orencia should be discontinued if a patient develops a serious infection. A higher rate of serious infections has been observed in adult RA patients treated with concurrent TNF blocking agents and Orencia.

In placebo controlled clinical studies in adults, of 1955 Orencia patients and 989 placebo patients, two cases of tuberculosis were reported, one each in the Orencia and placebo groups.

When treating patients with therapies that modulate the immune system, it is appropriate to screen for tuberculosis infections, as was the case with patients in these clinical trials. Orencia has not been studied in patients with a positive tuberculosis screen, and the safety of Orencia in individuals with latent tuberculosis is unknown. Patients testing positive in tuberculosis screening should be treated by standard medical practice prior to therapy with Orencia.

Antirheumatic therapies have been associated with hepatitis B reactivation. Therefore, screening for viral hepatitis should be performed in accordance with published guidelines before starting therapy with Orencia.

Interactions: Formal drug interaction studies have not been conducted with Orencia.

The majority of patients in the RA placebo controlled clinical trials received concomitant DMARDs, NSAIDs and/or corticosteroids. Most patients were taking MTX. Other less frequently used concomitant DMARDs included chloroquine/ hydroxychloroquine, sulfasalazine and leflunomide. There is limited experience with abatacept in combination with other DMARDs such as azathioprine, gold and anakinra. Population pharmacokinetic analyses revealed that MTX, NSAIDs, corticosteroids and TNF blocking agents did not influence abatacept clearance (see Pharmacology, Pharmacokinetics).

Concurrent administration of a TNF blocking agent with Orencia has been associated with an increased risk of serious infections.Concurrent therapy with Orencia and TNF blocking agents is not recommended. There is insufficient experience to assess the safety and efficacy of Orencia administered concurrently with anakinra or rituximab, and therefore, such use is not recommended.

Orencia has not been studied in combination with agents which deplete lymphocyte count. Such combination therapy could potentiate the effects of Orencia on the immune system.

When reading inserts for side effects keep in mind, the side effects listed may not have anything to do with the drug at all. All it means is that in the drug studies someone had the symptoms listed and it doesn’t necessarily mean that drug caused it. In a lot of situations it’s a coincidence that you’ll have a specific symptom while in the study, that is unrelated to the drug itself. Black box warnings are put on drugs that are KNOWN to have serious side effects and can potentially be fatal. So please listen to your dr, if you trust your dr is giving you the best info then don’t hesitate to try a medication. Medicine is not an exact science, no 2 people are going to have the same exact reaction,or action because each persons chemical makeup is vastly different.

Since I started this thread I found out that my pancreatitis from July never resolved. I spoke to my primary today and he said to wait until after my enzymes are back in normal range and we will discuss it. He does not seem to keen on it but understands with problems with my pancreas, liver and kidneys I don’t have a lot of treatment options. I just had to stop Plaquenil due to allergy as well so I will do as he recommends.
My rheumatologist gave me 4 weeks to think about it while we waited for insurance approval. This is a tough situation to be in. Thanks for your input. It means a lot to have everyone’s support.


I truly feel for you. I absolutely feel your pain. My amylase was the high end of normal but it is the lipase which is high. He gave me a script for pancreatic enzymes. I had already gone gluten free and I am not much into dairy. My son is an athlete so our diet tends toward better foods these days. I did lose a total of 20 lbs since this started. There was actually a few weeks where I was able to eat normally and maintain weight but that changed quickly.

I saw a gastroenterologist immediately after discharge and it appears that she left no surface unscanned. I even had an endoscopy.the outpatient desk began to know me too well.

I am up now because of pain and nausea (and dreaming about the mouse in the house that missed the beware of cat sign). I pray that they resolve my issue so I don’t have to suffer as long as you did. My primary wants me to see a particular pancreas-liver specialist he is friends with. My primary knows I am a single parent without a support system and he looks out for me. I am going to ask him about what you told me so thanks so much for sharing that. I am going to have to work on the stress part. I vent to a therapist. I work a few hours a day at a church and they have been good about my sick days despite not having sick time. I hold onto that because it gives me something to focus on.

It is amazing how we are able to adapt and survive against the odds. This is such a wonderful group. It is a safety net filled with comfort and support. It is good to be here.


Kaz said:

I have the same issue Cassi440. I suffered from bad bouts of pancreatitis back in the early 80’s. It was terrible. I have occasional attacks now, but I have a condition called macoamylasemia which I bet is exactly what you have, given you mention one enzyme. It is the serum amalyse which is always raised and fluctuates but never normal. For true pancreatitis you must have lipase also raised.

I would suggest you speak to your doctor about having a gallbladder scan. I was advised in 99 ( after nearly 19 years of repeated extremely bad pancreatitis attacks - both amalyse and lipase raised in the thousands) to have my gallbladder out as my diet was good so they knew that was not an issue. I had a CT at the time and they said there were no stones in my gallbladder. However, when they took it out (the surgeon gave me pictures and even brought it in a jar for me to see) it was completely filled with like sand. The instant relief I had was enormous!!! As I was in pain every day in the end and had lost so much weight. So do consider seeing someone and raising this as pancreatitis attacks can kill you!! Raised amalyse on its own won’t.

Many drugs can trigger pancreatitis too, especially if one is suspectible - another reason I steer clear of many drugs. Unless a person has had this condition they do not realise the pain, and the pain cannot be relieved. You would understand what I mean.

You also need to be extremely careful with diet. Cut out ALL fats. Trim meats of fat, don’t eat diary plus a lot more. This helps to reduce the trigger of attacks as any fat can trigger it to inflame. Alcohol is very bad and should be avoided totally. Softdrinks are also bad. Keep a food and drink diary and when you get your pain note it down so you can see what food/drinks are a trigger. I could not even eat a small slice of cheese as I would double up in severe pain.

So personally as a person who lived through this nightmare of chronic pancreatitis for many years (lucky to be alive) and now live with macroamylasimia (which mind you some specialists think doesn’t cause pain but it does!!! especially if levels rise with medications, food etc.or when in flare up periods in our disease process), I feel for you as I didn’t have any way to remedy this for years). The specialists I was under stated that when pancreatitis is a regular thing, the gallbladder needs to be removed as generally it is the primary source of the pain (usually filled with sandy grit as opposed to stones - the sandy grit is stones in sand form). So please do consider this and ask to see a gastroenterologist.

As for just raised amylase, it is not harmful to your body unless both amylase and lipase are raised together. I have been told this by a number of top specialists. I am currently under a top specialist at the moment as they suspect I may have Chrohns… long story, but we also discussed my previous chronic pancreatitis and she also stated gallbladder is the most common cause of chronic pancreatitis and having it removed is the first thing a person should have done if diet alone has not resolved the issue.

I feel your pain as I have been there, done that with this condition. As mentioned I still get pain but it is not as severe or as often as before I had the gallbladder removed, and the lipase has only been slightly raised a few times since, but my amylase is raised well above normal all the time and fluctuates up higher during pain. But the pain is nowhere near as debilitating as true pancreatitis and is generally brought on from medication, high stress or disease flare ups.

Please do consider getting your gallbladder assessed and speak with an gastroenterologist. The pure relief I had from having this removed was amazing!!! I was absolutely gobsmacked at how full it was of this sandy grit. The specialist stated back then that this grit doesn’t tend to show on scans. These days maybe it does, I don’t know, as scans have improved in quality of resolution a lot. But I would be steering clear of any medications (where possible) that have pancreatitis listed as an adverse reaction as you will be more inclined to get it.

I don’t do IV steroids because of this, only oral and monitored very closely but try very hard not to take steroids. Only have them as last resort. I use supplements which have worked in reducing inflammation, that is why I mentioned about fish oil, although one cannot take this during true pancreatitis when both lipase and amylase are both raised. But if it is only your amylase raised it should be no problem.

Cassi440 said:


I also read that info and am aware. It has been on my mind. I have asthma that gets triggered mostly by environmental stuff but also whenever I get a cold it has a nasty tendency to drop in for a visit to my lungs. So, this is a concern for me with this drug.
I hope to see my trusted primary today and talk to him about it.i have other issues such as recurrent abdominal pain and weight loss which my rheum thinks but can’t confirm is AI pancreatitis. One of my enzymes remains abnormal. I am just a mess right now.
Thanks for looking this up. I will let you know what I plan to do.