News:

New to the boards? Start with "Welcome! What you need to know as a member of this community"

Main Menu

Are biological drugs enough?

Started by Sharon, June 03, 2017, 05:01:03 PM

Previous topic - Next topic

Sharon

I have read that biologicals are frequently taken with other meds
from the DMARD family and are often not enough to help on their own,
especially when you have both SJS and RA.
For those on biologicals: do you need other meds as well?
Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....

Joe S.

What do you mean by biological?
Here is what I take:
Tart Cherry extract reduces uric acid in your system (RA).
CBD hemp oil helps with pain.
D3 we do not deal with sun well so I supplement.
Omega-3 - I take 5800 units of this to reduce my cholesterol.
Acetyl-L-Carnitine repairs mitochondria DNA.
R-lipoic Acid removes the debris from the repair.
Carrot Juice helps your body create endorphins.
Inositol to take the weather cycles out of my pain cycle.








bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

SunshineDaydream

I am a member of a Benlysta (biologic for lupus) group and most people there take that along with something else, usually plaquenil, a steroid, azathioprine and/or methotrexate. Many are able to reduce or discontinue steroid after being on Benlysta for a while.
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

Sharon

Joe- I mean biological drugs such as Rituximab, Orencia....

Sunshine- That's what I feared....I can't tolerate any of those other meds other than prednisone which I DON'T want to get back on. I thought finally getting Orencia approved would solve my problems but now I'm worried again.
Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....

Jasper

I receive Rituximab infusions. 2 infusions, 2 weeks apart, every 24 weeks (total of 4 infusions every 48 weeks).

I also take Plaquenil.

I think which drugs you take and how many depend on your diagnoses, which drugs work for you and how well you tolerate them, and how severe your diseases are.

I recently read the newest treatment recommendations for RA and they recommended a 3 drug regimen. Methotrexate is first line treatment and other drugs are added to the regimen. They found that a biologic and Methotrexate given together work better than either given alone. There are several combinations that can be tried but Methotrexate is always a cornerstone unless it is not tolerated.

For me, I find vast improvement with Rituximab infusions so I am satisfied with just taking Rituximab (and Plaquenil, of course).

So, I think a lot of what you end up taking depends on you and your diagnoses, your symptoms, disease progression, and which meds you tolerate.
ANA 1:160; SS-A+; MSG +; Plaquenil, Rituxan infusions, Restasis, HRT, Curcumin, Calcium, CoQ10, NAC, Resveratrol, Whole Omega, Omega 3, R Lipoic Acid, Acetyl L Carnitine, Krill Oil, Mag. Threonate, Bio-Collagen UC II, NAD+, & Vit A, B, C, D, E, K 1 & 2.

Sharon

That's what I thought Jasper, but it's a huge problem for me
since I simply cannot tolerate Methotrexate (it's such a toxic drug!)
or Plaquenil (severe neuropathy side effects).
The way things are progressing I need to add.
Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....

Jasper

Well, you may need to add, but I would see how Orencia does first. If it works, then great.

I don't know all of your symptoms or if they are mostly Sjogren's symptoms or RA symptoms.

I have mostly Sjogren's symptoms and that is the main reason I am taking Rituximab. I do have joint pain and stiffness, but no bone erosions.

Rituximab helps most of my symptoms, both Sjogren's and RA, so I am satisfied.

I am very sensitive to a lot of meds so I am rather limited anyway. I cannot take most of the RA drugs, including Methotrexate, due to past Hepatitis C. I tried Imuran and Cellcept and did not tolerate either of them. Imuran shot my liver enzymes up and made me very sick. Cellcept made me feel worse than I already did. I could not function at all. Rituximab was the next drug that I tried and it worked very well for me.

So I would see how the Orencia works. Maybe you won't need another drug.

ANA 1:160; SS-A+; MSG +; Plaquenil, Rituxan infusions, Restasis, HRT, Curcumin, Calcium, CoQ10, NAC, Resveratrol, Whole Omega, Omega 3, R Lipoic Acid, Acetyl L Carnitine, Krill Oil, Mag. Threonate, Bio-Collagen UC II, NAD+, & Vit A, B, C, D, E, K 1 & 2.

Sharon

Thanks Jasper, up until a few months ago my diagnosis was "only" SJS.
But the pains became intolerable which led to X-rays which led to the discovery of joint damage of many joints.
If the Orencia doesn't work I'll be considering Rituximab, though I know I wouldn't react well to the infusions or steroids + antihistamines given along with the infusions. The Orencia is a subcultaneous injection that I can administer myself.
Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....

Carolina

Well, we mix and match, depending on our needs, the availability of the right medications, and our tolerance level.

Sometimes the 'cocktail' is enough.  My mixture works most of the time, thank goodness.

Become a part of the team...work with your doctor(s) to achieve the best possible outcome.

Regards, Elaine
Female-Elaine,83-CVID-pSJS-WMD (Eylea)-COPD-Inter. Cys-PN-CAD-Osteoarth-SFN-Erythromelalgia-SIBO-PMR-Adrenal Insufficiency-Hearing Loss-Achalasia-Bacteriurea-Power Chair-IVIG Gamunex 50 gm-Medrol-Wellbutrin-Buspar-Gabapentin-Atenolol-Salagen-LDN-Lipitor-Premarin-Nexium-Om.3-Repatha-KLOR-CON-Maxide