Needing Advice!!!

[Leesa-Marie]

Hi!! This is my first time doing something like this but I need advice!! My husband was diagnosed with RA this May. He was then put on Meghatrexate and Folic acid. Then Aug 3 he had to have surgery on his surgery due to the fact that the RA was eating away at his tendons and joint. Because of this he had to get off his medicine. THEN we found out his other surgery needed surgery too. At this time he had been off of his meds for a month. Aug 16 he ended up in the ER. His hands and feet were so swollen. His hands looked like glove balloons (the kind you blow up in a dr's office to keep your restless child occupied). They were actually "weeping" fluid. He had 102.0 fever. Also, his elbows, knees, wrist, and ankles were swollen and very painful. They had to give him 4 diff meds to give him some relief. The next day we went to his rheumatologist were she put him back in his meds. So she doubled the Methatrexate injection and added Sulfasalazine. Also did blood work. We got the results today and his C-reactive was 261.4 and his see rate was 93. So now they want to start him on biologics. But I'm thinking his levels were so high because he was just having a flare up. I'm worried about staring him on the biologics. Anyone have any advice on what we should do? Should we do another blood test after he's been back on his meds for a while to see if the levels go down? And I'm sorry this is so long!!

[Hidden]

Oh hun sounds like you and your hubby have been through the wringer. Your rheumatologit must of suggested a biologic drug because doubling up on methotrexate along with sulfasalazine just isn't working for him. His Ra is must be very aggresive and too much of mtx could be dangerous for him.

I know you're scared so now is the time to let your doctor lead you. Who know's? Maybe in 3 months time you will look back at this day and wonder why you worried so much.

All the best to you

Sue

[msjenni]

Leesa-Marie I am so sorry to hear about all that your husband and you have been through in such a short amount of time. I agree with Hidden that it sounds like your husband has a very aggressive form of RA. I'm not a doctor but if you and your husband don't feel comfortable look into getting a second opinion. High doses of methotrexate can be very dangerous and obviously there is a reason that the rheumatologist wants to start him on a biologic. A lot of us on this board are on some form of biologic. I was just diagnosed about 18 months ago with RA and I have already switched biologics twice. While I also continue on my oral DMARDS such as the sulfasalazine and Plaquinil. It's very common in fact to be treated with both.

It sounds to me that your husbands doctor is trying to get his RA into remission as quickly as possible because of all the damage that has already happened to his joints. Like I suggested though please seek a second opinion if you feel uneasy about the treatment that his current physicians is suggesting. No one ever said that you have to do what just one doctor is saying.

Best of luck to you and your husband and I hope he finds some relief and healing.

Many Blessings 💜

[popsmith1874]

Hi there I wouldn't worry too much about going onto Biologics as I failed on mtx sulfazalasine and hydroxocloroquine and I'm now on a new Bisomar Benepali and still on mtx and it has turned my life around. I still get the odd pain here and there but not as bad as I used too be, 2 years ago I couldn't even get out off bed but now I've got a lot more energy and go to gym and fitness classes 2 to 3 times a week so there is light at the end off the tunnel xxx

[Lucy11]

My vote is to go on biologics. I believe the biologics have fewer side effects and in my opinion it's best to fight this disease early and aggressively. He can always come off the biologics but if they work for him he won't want to come off. If your doctor suggests it then I'd go for it.

[Leesa-Marie]

Thank you everyone!!! Lots of great advice!!! I never realized how horrible this disease could be until now!! Im ashamed to say I always thought this was something older had but I know now considering that my husband is only 37!! Thanks again to all the kind reply's!!

[Hidden in reply to Leesa-Marie]

There is another wonderful wife on the NRAS forum who post questions about her husband's RA. She, like you, wants to understand her husband's disease. Her name slips my mind at the moment, but I will try and find her for you.

Your husband is one lucky fellow to have a loving wife like you.

[Fristrated]

I had so many reservations about ENBREL. MY NEPHEW WHO IS A DOCTOR, AND MY DOCTOR WHO IS A PERSONAL FRIEND CONVINCED ME, it's a big decision, I'm farrrr from perfect but a zillion times better than before the enbrel and I. Called Safety Net Corp , my middle income bracket gets me the meds shipped to my front door! GO FOR IT, be patient, it takes a good 8 weeks before u become alive again👍🏼👍🏼👍🏼😊😊😊😊😊😊😊😊😊

[Leesa-Marie in reply to Fristrated]

Thank you!!

[Preacherman]

Hi Lessa-Marie,

You have very good advice before you. Please know that bilogics are "considered safe", so long as bloodwork is done regularly, taken according to prescription and your Rheumatoligist is up on it. If all this is done to doctors orders your husband should fair well.

Blessings,

Brian

[SherryKayB]

You have had a really rough and scary time, and you have my support and sympathy. Sorting out all the symptoms and illness related to your husband's condition is certainly challenging. I cannot advise you on the biologics because my own RA doc is very reluctant to start me on them due to the fact that they increase likelyhood of infection, and I am very prone to all infections. In fact, the doc and I joke that we never met an infection that didn't love me! I am not making light of your very, very serious concerns. I just have no really helpful advice and bow to those who do. In the meantime, take care of yourself, too. This has been really hard on you both.

[yuriegas]

This is just my advice. I have had RA for several years. The quicker and faster your hysband is on a Biologic is going to be the best for him and his outcome. They do take a bit to kick in but you will have your life back!!!!

[Leesa-Marie in reply to yuriegas]

Thank you!!!

[Melody123]

I feel much better when I take my biologic Orencia. The sed rate should be about 35. I think he needs the biologic. It makes a big difference for me. I'm also on methotrexate pills and sulfasalizine Just make sure he does not get around sick people as he will be immune suppressed so he could catch their cold. Get the flu shot as soon as they come out and also a pneumonia shot every five years. I know it's a difficult time for you but it will get easier. God Bless

[Leesa-Marie in reply to Melody123]

Thank you so much!!

[Leesa-Marie in reply to Melody123]

Thank you and I pray it does get easier

[Deidree]

I've been down the same road. Trust me and this is coming from somebody who is extremely holistic in her approach to everything. Take the Biologics. For me, they are finally helping. Listen to his doctor. I refused to take Biologics for a long time and that was a mistake. Sending prayers. 🙏🏻

[Robinr805]

The biologic's can be so dangerous. I was on a few of them and ended getting very sick you have to be careful with them. Make sure he's taking plenty of vitamin c, oregano oil and kyolic. He needs to make sure his immune system is working. I also started using plexus and feel better than I have since I was diagnosed. It's a commitment to health but it's worth every minute!!!! If you'd like more info on exact protocol with plexus please send a message and I'll be happy to help!!!

[Multijo]

Your husband is very lucky to have you as I am sure he already knows. After being on the biologics and possibly a lower dose of the methotrexate it will be so different. I thought I would never be strong enough to even get out of bed and I needed my husbands help to dress.

that is in the past now.

You will have to be careful about infections. But you can work with. His doc on that. In the beginning I used to walk around with a thermometer in a pocket but I have gotten a little more relaxed

Once you guys get past this immediate phase there are dietary changes you can make that can be of significant help.

Taking turmeric, omega 3 fish oil (capsules and fish many times per week), vitamin D, vitamin B 12, flaxseeds and/ or flaxseed oil capsules. Remove gluten, reduce sugar.....take one or two changes at a time so it's not overwhelming.

Jo

[kellienix]

I've had RA for 22 years and have been on every medication available. I've had numerous surgeries, including fusion of wrist. The biologic meds offer much better opportunity to stop disease progression and joint destruction, especially early in the disease. I currently am on Rituxan infusions, methotrexate and Arava. I recently stopped working and now feel the best I have in years. You won't regret trying biologic. It just takes time to discover what therapy combinations will work for your husband. Best wishes to you both.