Biologics

[Harry19]

Hi my fatigue is crippling at the moment . My dr considering biologics . What have your experiences been please.

Any help much appreciated !! Feeling quite desperate at the moment

[Jmiller623]

Hi Harry. Depends on which biologic. Are we talking rituximab or benlysta? Both will dampen the immune system and most common side effects are reaction to infusion (so we get premeds) or infection after the drugs suppress your immune system. Rituximab knocks out all antibody making cells while benlysta knocks down a molecule used to stimulate antibody making cells (called B-cells).

They are usually well tolerated for the most part. Biggest factor in continuing is whether it works or not. I know people who skip them if they have an active infection and some go off completely for recurrent infection or too low of cell counts.

Is there anything you are particularly worried about? Are you on anything now and how is that going?

Sorry you’re not feeling well right now. Sending hugs your way. ❤️xx

[Harry19 in reply to Jmiller623]

Thanks for responding . I have tryed plaquine and snow on azathioprine . I’m coping with the fevers and aches , but my fatigue is overwhelming . I literally can’t move some days . I can see the biologics seem to help with pain . But my biggest issue is fatigue . I’m having no life and have a young child to care for

[Jmiller623 in reply to Harry19]

Aaaaaw Harry. I’m so sorry. I just posted about this today on FB. We all live with so many maladies which becomes our new normal but the fatigue is really what debilitates us all and there isn’t much that works for it.... even lupus treatment.

If I may make some suggestions.... make sure your B12, folate, iron and vitamin D levels are normal. Make sure your thyroid is okay. These things can contribute to fatigue. I was on Adderall for the longest time for adult ADD (basically pre lupus diagnosis brain fog). I can’t take it anymore due to vascular problems and Raynauds. I now take Wellbutrin which is a stimulating antidepressant and this helps.

There isn’t much to help with the fatigue. Stimulants were the only thing that worked for me and kept me functional for a good 10 yrs. I no longer work anymore because of the fatigue and a whole bunch of neuro problems. And I can’t touch adderall any more. I also make sure to limit sedating meds which we have thrown at us all the time - gabapentin, amytriptilline, opioids.

I think there is a good Lupus UK thing on fatigue as well. I’ll have to find it or someone else will probably post it.

[Harry19 in reply to Jmiller623]

Thanks for the reply and advice . I’m so at the end of my tether . Doc says bloods are fine so no deficiencies are showing up . I’m trying to work but I’m not functioning and I feel guilty all the time .

[Sara_A in reply to Harry19]

I seriously feel for you, I see u have responded to my post on my extreme fatigue on sulfasalzine. I am struggling massively too and just cannot function with day to day things. I too have 2 young children now 5 & 8 yrs old and its horrendous everyday. I've even had the thought thru my head of asking their aunty to take them to look after them as I just cant manage day to day and feel they are missing out. I have a partner their dad who works full time hes amazing and has to do everything for them and me atm.I'm currently off sick for the last 6 wks and just can't see a light at the end of the tunnel, I haven't even showered for 3 days! I don't have the energy or get up and go to.

I just feel like a rock just sat here unable to move. The house is a mess nothing is getting done, my partner is doing enough to sort out the kids they are fed, clean and happy and healthy no problems there. Just everything else that would b done day to day isnt getting done I just cannot do it.

[Harry19 in reply to Sara_A]

It’s awful and it’s slowly breaking my spirit x

[Cathyan in reply to Harry19]

It must be so hard coping with the fatigue with a young child needing attention. Personally I found my fatigue lessened when I changed from Azathioprine to Methotrexate. Took maybe 6 months but I'd been on azathioprine for years so I'm sure it was the methotrexate that helped it.

[katidid in reply to Harry19]

Curious: is it the same level of fatigue everyday or do you also get what is called “post exertion fatigue / sickness”. Often about 24-48 hours after extra exertion the fatigue is much worse and, often, crippling. Sound familiar or no? The extra exertion could be anything from going grocery shopping to exercise to a long phone call. It’s an important thing to identify if it is happening b/c there is a protocol beyond medications to mediate this.

[katidid in reply to Harry19]

Oh, and new or additional stress. That’s a big one.

[Harry19 in reply to katidid]

Hi

Really good points . Thank you . The fatigue has not the same everyday some days it’s overwhelming and I’m sleeping about 16-18 hrs a day. After a busy or stressful day I do find the effects but right now even when I’m doing nothing .

[miccika1 in reply to Harry19]

Are you taking any prednisone?

[Harry19 in reply to miccika1]

Not since Christmas

[nanleighh]

I was offered, but after exhaustive research, the risks of side effects for me are way too high. Good luck in your journey

[Willow1414]

Dear Harry19

So sorry you are suffering with fatigue.

I’m due to start biologic within the next month . I Agree fatigue among all the health issues is all consuming , I too are finding this very difficult to live with , I Can’t plan anything , and worry about the smallest things in case I Carnt cope with the fatigue overload afterwords , but stressful life events tends to take me over the top , even everyday stress .

I try to foresee any life’s stresses , and try and plan a lot earlier to limit worry if any nature , easily said than done .

When I have better days with the fatigue , I try not to do too much , has this doesn’t help either , pacing does helps .

I’m hoping biologics does bring relieve, I think if symptoms are brought under some kind of control , either medicinally,mentally and physically either all or one of these it can help with this tremendous fatigue burden most lupus people suffer from .

Love yourself more , look at your diet , find and seek positive people’s company more or pet company .

Hope this helps .

🦋❤️

[Harry19 in reply to Willow1414]

Thank you for words of support , imacutally trying the anti inflammatory diet to see if it helps x

[Tbrz]

Hi Harry, sorry to hear you are having a bad time, I know how horrible fatigue is as I’m currently having a bad episode, it physically hurts to shower at the moment. I receive rituximab as I have GPA vasculitis and while it has stabilised my condition I do still have a huge problem with fatigue, as I understand that this is an issue with autoimmune conditions. Certainly, I have never been told that rituximab helps with fatigue, although it might be different for Lupus. There was some interesting posts last week about coping with fatigue, which you can search for. I hope you feel better soon 😀

[Paprika60]

Hi, I have had both Rituximab and now currently onto my third IV of Belimumab. It is given every 2 weeks for three infusions and then once monthly. The trial lasts 6 months I was told. This is much simpler and takes far shorter time. But importantly gentler, much more than Rituximab which kills all B cells. Belimumab only wipes the rogue B cells out. If it ends up being effective, one has to get the infusion (2 hours) once a month as a topup. I do not know what the long term side effect may be. Belimumab is more advanced therapy. It was explained to me as a Silver Bullet by a doctor. It is specifically designed for Lupus and is safe enough for pregnant women. They have to see if it will agree with you and also effective. It takes six months of trial and then the doctor will decide, I suppose, by blood test.

I can never have Rituximab ever again. I had such nasty reaction and lasting side effects from it. It was after Rituximab that caused me crippling fatigue ever since. Many people do very well with it. I was the unlucky one. They gave me so many shots (vaccines) before the actual Rituximab and I think my fragile body just couldn't take it. Belimumab isn't offered as easily due to its higher cost. And it is too early to tell for me but despite some side effects (headache but then I have had such horrible lasting reactions from two Pfizer doses) I feel a bit better already.

My main complaint too is not having any energy. I have to try to do my do list before lunch with in slow pace. After lunch I am basically useless. Long before Covid, I hardly went out except for a daily walk. My professional life on hold and no social life except for my husband and doctors! Over the years I have learned to build many coping methods so I am not complaining anymore. I accept my condition as a friend (uninvited but never less staying!).

Hope you can find help from Belimumab. Good luck!

[Harry19 in reply to Paprika60]

Thank you so much got your response . It’s really helpful . Only good thing is we are allIn it together xx

[katidid]

I’ve been on 6 of them. Totally depends on which ones. Some do not play well with Lupus and are absolutely contraindicated. Otherwise, the ones that work do help. Not a magic bullet and which symptoms improve are kind of based on you as an individual. My biggest improvements were joint mobility, joint pain, less stiffness, fewer skin flares and less myalgia (body aches). I have not had one yet that really improved the fatigue and brain fog. I get a few more energy days, but its the primary symptom that just doesn’t seem to respond. HOWEVER I know a fair number of other ppl who have reported less fatigue.

Advice on biologics: give them time. It takes them awhile to fully do their job. They are absolutely nothing like steroids or fast acting meds. You have to commit to them. Also, you may have to switch up every few years. There is a tolerance phenomenon in some patients where the body stops responding to treatment.

Just make sure to check the medication type before you start. And if your doc doesn’t know that TNF inhibitors (of any kind) can cause DISLE and make Lupus worse, find another doc!! Plz feel free to DM me if you have any specific Qs.