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RA Medications Making Me Extremely Ill

A myRAteam Member asked a question 💭
Jamestown, TN

Hi
Started on RA medications.
First prednisone which I had no problems with.
Second methotrexate which made me sick 24/7.
Third Leflunomide. This was even worse. Advise?

The Leflunomide is makes me so light headed I can’t do anything. I have never been so ill in my life.

I’m scared to try something else

Has anyone else had this problem and if so what medication did you take that didn’t cause so many side effects?

July 31, 2023
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A myRAteam Member

Hi Firea. What is the dosage of you MTX. ( Methotrexate ). Prednisone you need to be so careful with because of the risk factors. It can tear up your lungs and gut and kidneys as well as other things. I can see maybe put you on a tapering dose while you are flaring. Prednisone can also mess with your adrenals which you don’t want. If you take Prednisone all the time you will need to wear a medical band saying you are on Prednisone and that your adrenal glands do not work. Your Adrenal glands sit on top of your kidneys. They produce hormones that help regulate B/P hormones the help boast your immune system. They are very important. Anyone out there who is taking Prednisone on a daily basis and has been for at least a year needs a medical alert bracelet. It is very dangerous if you are sick and you do not let your Dr or Dr’s at the ER know you have adrenal insufficiency. Prednisone can also cause your bones to become weak and can break easily. You can also can weight on it.
I would maybe have the Dr lower your dose of MTX OR HAVE YOU TAKE IT BY INJECTION. It’s easier on the gut. If after about like say 6 months you don’t feel it helps tell your Dr it’s time for something else. There are plenty of DMARDS out there. Not all of them will make you sick. As far as Biologicals. Chemotherapy. I would just start with one and if it makes you sick or it is not helping then it’s time to switch. I had no problems with Remicade or Ruituxin or Embrel. The only one of those that worked for me was the Riutuxin. I did not get sick with any of them. You might take either Zofran or Phenergan before you start your chemo. Tell the nurse. I was also given Benedryl In case of an allergic reaction and I was given Methylprednisolone before my Chemo and that helps a lot. You have to advocate for yourself. If you cannot find a Dr that helps you then find another. You will find something eventually that will help and not make you sick and dizzy. These are hard drugs and sometimes it’s hard to find the right thing but you eventually will. Eventually your body will adjust to the medications and you will start feeling better. 🙏🏻🙏🏻🙏🏻 Praying for you and God Bless. 🙏🏻✝️🙏🏻✝️♥️♥️♥️

August 23, 2023
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A myRAteam Member

I started taking them at night as soon as I figured they were going to make me sick.

I don’t know what the doctor will do next. I phoned his office and told the nurse how I was feeling. She said stop taking it for three days and call back.

I don’t have the best doctor but it’s the only one close. He doesn’t explain anything just prescribed medicine and make an appointment to come back in 2 months.

July 31, 2023
A myRAteam Member

Methotrexate does not work for me. I am on a cocktail mix of five drugs but the one that has made the difference is Symponi. It is a biologic but is super expensive unless you have drug coverage, which luckily I do.

July 25, 2024
A myRAteam Member

Hi Firea. How much Methotrexate were you on? Sometimes medications need to be started at lower doses and given more slowly than is recommended. Methotrexate can be given by what is called Sub q which is an injection right under the skin and you might be able to tolerate it better. But again I would ask your Dr if he can start you on a lower dose and then gradually build up until you can tolerate it. The same thing with a Biologic. You can ask your Dr for an anti nausea medications and take that before they start your medications. With IV infusions most places will give you Benadryl and Tylenol before they start your medications. You can also be given something for nausea at that time too. The Dr can give you a prescription for oral nausea medication too so you have it at home. Make an appointment to talk to your Dr about the problems you are having and that way you can both put your heads together and figure out something that will work. That way to you are involved in making the decisions for your RA and health. My thoughts and Prayers are with you. Hugs to you to. Hang in there. They will help you find the best things for you. Oh one other suggestion if you can get off the Prednisone I would. Yes it’s a great medication and it makes you feel better but it’s a very destructive drug especially if you use it long term. 🙏🏻✝️🙏🏻✝️❌⭕️❌⭕️♥️♥️♥️♥️

July 25, 2024
A myRAteam Member

Rheumatoid arthritis (RA) medications can indeed have significant side effects. Here are some points from the knowledge base:

- Side Effects: Medications like methotrexate can cause hair loss, which can impact self-esteem. Other medications may cause side effects like stomachaches, GI bleeding, kidney damage, liver damage Show Full Answer

Rheumatoid arthritis (RA) medications can indeed have significant side effects. Here are some points from the knowledge base:

- Side Effects: Medications like methotrexate can cause hair loss, which can impact self-esteem. Other medications may cause side effects like stomachaches, GI bleeding, kidney damage, liver damage, and increased risk of infections.
- Personal Experiences: Some patients have experienced severe side effects, including hair loss, and have had to try multiple medications before finding relief.
- Importance of Medication: Despite the side effects, many patients find that without these medications, their quality of life would be severely diminished.

It's crucial to discuss any severe side effects with your healthcare provider to find the best treatment plan for you.

July 25, 2024

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