Best medication?!

Bones, joints and muscles
1

Hi guys,

Hope everyone is ok!

I was on Methotrexate and Hydrochloroquine but had to stop these. I am due to go back on medication next month with a view of starting leflenomide and sulphazine a while later.

After all the research I have done, i don't want to start leflenomide mainly because of the emphasis that my consultant put on being free of it for 2 years before trying for a child.

What may seem ridiculous is that i do have a 5 year old and i am single, but I am only 28 and i would love more kids one day. I realise that it may not happen anyway but i don't want the added pressure of time limits thrown in as it is a long time and i'm not getting any younger!

So basically my question is (sorry to waffle on) is what are my other alternatives and what do people find best works for them?

Already my hands and one foot are so swollen from not being on meds and so i know that i do have to be on something soon!

Thanks in advance x

2

In autoimmune disorders there is no "best medication" - there is only the "best medication for you at a given point in time". You start at the top of the list - methotrexate mostly - and work down it as each "fails". You have "failed" methotrexate and hydroxychloroquine for whatever reason and had to stop them - so now you progress to the next on the list.

"Failing" may be due to you being unable to tolerate a drug because of the side effects (organ damage included) or it may be because it doesn't work for you. If you leave one of the middle ranks out you may not be allowed to progress to the next level because of the rules for funding or you may find that the bigger guns don't work or make you ill too - it restricts the doctor's options. All the doctor is saying to you is: when you are on leflunomide you have to think well in advance if you want a child. That is something that arises once you are in a relationship - you aren't at present. It may well be it doesn't work either - but you can already see what happens without medication.

3

If you can't be supportive Eileen, I'd rather you didn't comment. There's also no need to talk to me like a complete idiot or be so patronising either...

4

Hi Sarah like yourself I have an autoimmune well I have a few and like you Sarah I had the protocol of going through different meds ect after all my research I'm afraid there is not best medication for autoimmune diseases only what works for you is best Sarah and unfortunately it's all trial and error I have ankylosing spondilitis psoriasis arthritis also along with other things I'm now starting biological injections humira and hope this helps please go back to your doctor hunni and ask to be deffered to ra specialist and talk about the options for you I understand that your doctor is worried about the idea of you having a bigger family but its about u and ur choices Sarah never say never but just keep options open to I'm sorry if I haven't been helpful I hope you get the answers you reguire all the best love xkellymotion

5

Ask your doc about alternatives options if u do become in a position to have more babbies and what these drugs mean to u and your unborn child or children it may be that there are softer drugs available during that time? But if there isn't that's also something u need to think about hunni x

6

Sorry should have said I have four kids all delivered by c section I was also on meds during pregnancy but reduced doses I also had to have anti d jags throughout my pregnancys and after my fourth I had to be sterilised but I was adviced after first child that it could have health risks ect but like u I wanted more so after many arguments and conversations with my doctor we agreed to reduce meds while trying for a baby and once confirmed pregnant hope that helps x

7

Hi Sarah,

I find your thought process to be wise...thank you for protecting your child...

Rheumatoid is a dynamic disease that morphs....this is why a medication that helps today may not help tomorrow.

By observing a person's reaction to a drug, we can learn a lot about the rheumatoid in that person's body...Both Enbrel and Humira are TNF, tumor necrosis factor. Individuals whose rheumatoid responds well to either Enbrel or Humira are said to have TNF driven rheumatoid. Rituximab is a monoclonal antibody against the protein CD20. For those who respond favorably to Rituximab, we say their rheumatoid is CD20 driven.

Sometimes rheumatoid arthritis can be successfully treated with an NSAID...non steriodal anti inflammatory drug...such as Orudis, Feldene, Naprosin, Naproxin, Motrin, Indomethacin, Butazolidin to name just a few.

Steriods...not to be confused with anabolic steroids...prednisone, budesonide, methylprednisolone are three of many. Many decades of study have taught us to use steroids judiciously because steroids cause unwanted side effects such as bone density loss. Today, steroids are prescribed using a burst approach...high dose fast start, immediate graduated decrease, off.

DMARDs & Biologics... disease modifying anti rheumatic drug...

This class of medications modify, literally change the way rheumatoid behaves... Methotrexate (now the gold standard), hydroxychloroquine, sulfasalazine, Orencia, Remicade are all typically oral.

Rituximab is delivered by infusion.

Enbrel in the mid nineties was the first DMARD. I still remember watching the television news that night with tears running down my face. Those of you who face rheumatoid today should never face the full fury of this disease. Nevertheless, matching a sufferer with the best medication to defeat their rheumatoid continues to take time. As the class of medication used increases, so too do the possible adverse side effects. Be patient and work with your rheumatologist, only a board certified rheumatologist, to fine tune a treatment effective against your rheumatoid.

54 years of severe juvenile rheumatoid has left my body permanently damaged and deformed because medicine did not have the wealth of knowledge it has today.

I am grateful for all of the analgesics, NSAIDs, and steroids that made it possible for DMARDs & biologics to modify even my severe juvenile rheumatoid. Today my JRA relatively quiet. And once my rheumatoid quieted down, I forgot about the really tough times it raged.

The answer is, no arthritis medication completely protects a precious wee one...but, I know of many women who have had their rheumatoid quiet during pregnancy.

Rheumatoid loves to rest, I mean truly rest for days and weeks and months...the less we stress our bodies, the quieter our disease becomes. If I wanted to conceive, I would discuss the use of prednisone, NSAIDs, hydroxychloroquine, and sulfasalazine with my rheumatologist and with my OBGyn Breast feeding should be a separate topic discussed with your rheumatologist, your OBGyn, and your pediatrician.

kind regards