Biologics

[Alice70]

I was diagnosed with rheaumatiod 18months ago ,still haven't found me a medication to help with this dreadful pain ,having said that I take paracetamol, oxycodone and 10 mgs of prednisalone which do help to take the edge of ,reasons for no rheaumy meds is I've tried hydroxychloroquine three times ,I can't take because of stomache upset not tried methotrexate because of my breathing problems,I've know been trying past three weeks sulfasalazine as I'm increasing them stomache so bad , I saw my rheaumy Dr three weeks ago ,she told me if sulfasalazine upset my stomache to get intouch with her secretary then she would try me on biolohics ,trouble is I'm thinking had biologic injection Thursday gone,(Denosumab)for osteoporosis, I am worried that I won't be able to take to different kinds of biologics ,does anyone else take two different types ,to be honest I think it is the prednisalone that lays a foundation for all this stomache upset as stomache is not good before I start taking any other meds ,I do take lansoprazole 30mgs in morning gavisgon at night

[lala1958]

Good Morning Alice

I have RA and on my last possible drug here in Canada due to reactions, allergic and stomach and blood pressure side effects. Long story short after diagnosis in 2010, I have run the gammit of dmards and biologics. My latest RA drug Humira is the one I am on presently. I take it every 10 days and in addition to that one I take a biologic for high cholesterol, called Rapatha.

I’m not happy about taking 2 biologics however my RA is at a low level of inflammation so I don’t want to risk anything even though I gain weight each time I’m on it. I lose weight when I’m off it for surgeries, illness etc. First time in 15 years something worked longer than 6 months

The Rapatha lowered my cholesterol beautifully so I’m happy with that biologic with no side effects there. No issues with taking 2 biologics at the sam time but wear mask when flying or around Xmas in the malls. So far so good. I think everyone has a different journey here on this site and you will find what works for you and your body so don’t give up on this and you will win with your treatments eventually. Good Luck 👍

[Alice70 in reply to lala1958]

Thank you lala ,I have hip replacement in five weeks ,I was hoping I would get better pain relief before then ,good luck to you to

[Amnesiac3637]

It’s not really much good asking for the sort of advice you’re after on the site as everyone’s experience of different medications depends so much on their own particular set of circumstances and diagnoses. You’ll get many differing opinions which, whilst all very valid, will just muddy the waters for you.

The best thing to do is to sit down with your rheumatologist and have a discussion with them as they know your medical history and what is necessary for you in order to give you the best treatment. Take a list of questions and preferably someone with you who can take notes so you have the full picture with regards to pain control etc.

Your rheumatologist has suggested you get in touch with her secretary so she has a plan for a follow up to your recent consultation. There’s no reason you couldn’t take more than one biologic and it might just be the combination you need. Don’t give up, it all takes time as you know to get the right combination of medication. Best of luck.

[Alice70 in reply to Amnesiac3637]

Thank you for your reply ,I am going to send rheaumy Dr an email through her secretary

[medway-lady]

I don’t know any answers but could you ask about LEF or AZA we are all different and you really need to go back to RA team to get proper help. I hope you find some solution soon.

[Alice70 in reply to medway-lady]

Thank you I've realised I need to get intouch with rheaumatolgist

[AgedCrone]

make sure you tell your rheumy as Denusomab can react with other Biologic drugs

[Alice70 in reply to AgedCrone]

I will thank you

[Madmusiclover]

I can’t comment on your specific question but there are other types of drugs available: JAKs. Look them up. Took me 5 years to get to where you are in trying all the different drugs! Hope things improve.

[Alice70 in reply to Madmusiclover]

Thank you

[bpeal1]

This is a question which really needs to be discussed with your rheumatologist.

In the meantime reading the NRAS site about RA medication and how they work might be useful so when you have that discussion you’ll have some idea what the different options are. nras.org.uk/information-sup...

[Alice70 in reply to bpeal1]

Thank you for this info,I'll defo look atvthis site

[Evie3]

Poor you….it does take a while to get the right medication for you. I think most of us on this site have had some painful times/stomach probs along the way. Have you a Rheumatology helpline? If so speaking to one of the nurses should answer your questions.

[Alice70 in reply to Evie3]

I am going to send rheamy specialist email through her secretary tomorrow ,she said I could ,she said she will change meds for biological ,as I'm already on biologics for osteoporosis I am worried about weather or not to different biologics will mix ,I will let everyone know what meds I end up with ,thank you Evie 3

[Evie3 in reply to Alice70]

I am sure they will ensure it is safe. Await to hear how you get on

[Twitty999 in reply to Alice70]

Hi Alice.. would just like to share that for the past 3 years, I have been on 20mg weekly injection of Methotrexate & twice a year infusions of Rituximab (both are Biologics) and I can honestly say that I am totally pain free & no side effects at all. Long May it last 🙏🏻😃

[Alice70 in reply to Twitty999]

Thank you that is good to hear

[iongrill]

Hi Alice,

Bear in mind that all of the drugs are variations on treating symptoms and not cause. Biolaogics can be great, but you can wait up to 2 years to get on them in the UK, and they often have you take things like methotrexate which is cytotoxic. For some the symptom relief is worth the side effects of taking methotraxate, but not for everyone, I was defienitley in the latter camp.

While waiting for Biologics to suppress some part of your immune system, you could try trying to find and tackle the cause.

A great place to start would be a low lectin Ketogenic diet (or even carnivore).

This involves removing:

Industrial Seed Oil: - like Sunflower, Corn oil, Canola Oil, Rapeseed oil etc. Fruit oils like Olive, avocado and Coconut are okay, Extra Virgin olive oil is probably the best. Apart from having no nutrients in Seed oils due to processing, the Linoleic acid they largely contain is highly inflammatory.

Seeds, Grains, Legumes (Beans) (These are high in Lectins which are proteins created by plants to deter you from eating them, they damage your gut lining allowing things into your bloodstream that are not meant to be there. Your 2nd line of defence is your immune system, and if some of the peptides it sees leaking in and attacks are also expressed on the surface of some of your cells, you have an autoimmune disease, like RA etc.

NightShade Family are also high in lectins (Potatoes, Tomatoes, Peppers, Aubergine

Avoid refined carbs and starchy veg, You mostly have the above already, but avoid Sugar, Fructose, Fruit Juices, and Honey.

You are aiming to keep total carbs to <20g per day, so eat vege like cabbage, Brussels sprouts, and Broccoli. (there are a lot of pitfalls with many veg above and beyond anti-nutrients like lectins. One to avoid is high Oxalte foods, like surprisingly Spinach and Turmeric. Many veg have lots of nutrients but many are not bioavailable because of the antinutrient content, this is why Meat is a much better source in general.

Eat lots of red meat, eggs and animal fat, butter (if you are not dairy intolerant, beef dripping etc. You want most of your calories from animal fats, so fatty red meats, many supermarkets do Grass Fed Mince with 20% fat for example.

If this is going to help, you should start to notice improvements in days, reduced inflammation. significant weight loss due to water loss associated with reducing inflammation. 2-4kg is quite normal in the first few days.

I have cured numerous chronic conditions switching from Vegan to Low Lecting Ketogenic. I have since transitioned to Carnivore. I have psoriatic arthritis. I am now on a biologic, and if I have a break for a few months the joints do slowly become more painful. But when I break the diet and eat wheat or rice or ice cream (sugar) I bloat 2kg plus overnight and all my symptoms get much worse in days. So for me it has not been a cure, but has been a life changing help. apart from the PSA, other conditions have totally cleared including IBS, a heart condition called POTS, chronic yeast infections.

It was my now EX cardiologist that suggested I go carnivore and told me to follow Dr Ken Berry on Youtube, I was very good advice.

[Alice70 in reply to iongrill]

Thank you for taking the time to write this most informative post ,I have looked into diet ,I have been following Barbara Oneil on her diet for arthritis ,I haven't dieterd jet ,her advice is much the same as what you have wrote ,I have just wrote email to rheaumys secretary ill see what rheaumy has to say first about another biologic thank you once agian

[Happy5]

Seems to be two different issues here Alice, one your pain, two getting RA controlled?

Firstly my friend was like you took a bit of juggling to find the meds that worked. Have you asked about anything that you can take to protect your stomach?

When I had my hips replaced pain in that location gone, at same time hospital discovered blood in my vomit so I was given meds to protect my stomach.

Secondly the pain issue I say to people "I'm always in pain it's the intensity that varies" so discuss all these issues with the RA specialist nurse, they have a wealth of knowledge about managing our RA.

All the best with hip surgery.

[Alice70 in reply to Happy5]

I do take lansoprazole every morning ,I have email my rheaumatolgist though her secretary this morning ,thank you happy5