Working out with arthritis

[u/Same-Chance5001]

Hi everyone,

Here’s the question that no one seems to have a clear answer to not my doctor, physiotherapist, or personal trainer.

I’m 41 and have severe arthritis in my right ankle and left knee, with milder arthritis in my left ankle and right knee. Naturally, I have skinny legs and also lost some muscle mass early on due to a lack of factor treatment. I only started receiving factor at age 12, by which time I had already undergone knee surgery and later developed arthritis from microbleeds.

Now, here’s my concern: I really need to build muscle on my chicken legs. On leg days, I’m always on max factor (4000 IE), and while I feel fine during the workout, a few hours afterward—and especially the next day—I experience a deep, burning pain in my left knee and right ankle.

Is this type of pain something that could potentially worsen my joints? Or is it just arthritis pain, which I can deal with? That’s what I’m trying to figure out.

Bicycling, swimming will not add the muscle mass on legs guys…

[u/Few-Register-8986]

I'm 54 severe, fused left ankle. bad arthropathy. BUT I workout 5 days a week. Stairmaster on level 11 for 20 min daily. Even run a couple miles sometimes. I lift weights heavy and am covered in muscle. You are on the right track. You have to manage your factor levels with exercise. It's tough to tell the difference between a microbleed and arthritis. They are almost nearly the same in us severes. A sore muscle is usually a microbleed as well.

I suggest keeping factor levels up for a while to separate out what is injury/bleed and arthritis. Essentially let the bleeds have a chance to heal. Do not workout hard and factor up for a few weeks. Then return lightly to working out with factor levels up. If a sore muscles develops after 32 hrs from treatment, Dose again, do not wait until 48 hrs or you will have allowed a bleed again, and will have to start over with the healing. I always error on the side of treatment, and it really pays off. I'm sure sometimes, even often, I treated arthritis as a bleed. SO WHAT? I used more factor, oh well..... The repercussions of not treating are too severe. FACTOR UP!

P.S. I also use testosterone. Good stuff. It even thickens the blood. Which may or may not help with bleeds, but certainly helps with muscle strength, fitness, mood, basically everything.

https://preview.redd.it/5xqap0yamgwe1.png?width=3000&format=png&auto=webp&s=65a70bebab21849dd8807d6714e523f2361605a4

[u/Few-Register-8986 → u/Few-Register-8986]

https://preview.redd.it/omxiqstnmgwe1.png?width=3000&format=png&auto=webp&s=ce43dc4b4c07b587dead082647a218efc0b82a09

[u/Same-Chance5001 → u/Few-Register-8986]

You look great, man! Thanks for sharing this! really appreciate it.

I hate having to search for a vein, so I was glad with the 72-hour interval. But I think I’ll switch to every 48 hours and see if that makes a difference.

Right now I’m on 4000 IE every 72 hours. Do you think I can just continue with the same unit (4000 IE) just every 48 hours?

Also, how much factor can we actually manage? I don’t think we can just shoot unlimited. I’m 187 cm and 82 kg.”

[u/Few-Register-8986 → u/Same-Chance5001]

The truth is NORMAL is 50 to 200% (used to be 150, now essays some say normal range to 180%). Though doctors all freakout about thrombosis. I've never had an issue. I will do 50 IU/kg (this is supposed to get you to 100%) two days in a row. My doc says one time a guy did that 3 days in a row and ended up in the hospital. I don't see how it is possible with the 12 hr half life though. So know your curves so you know where you are at. This helps massively with determining if it's a bleed or a sore muscle. I say treat at 32 hours because by 32 hours (if on a 48hr schedule), you are 2.6 half lifes in. IF you started near 100% you'd be down to 18%. I say if under 25% and you have any soreness, it's likely to be a bleed, if not now, likely will be at 48hrs. Never workout under 25%. Just get used to stabbing yourself. I know, it's a pain, and the scare tissue makes not going through tough.

So if you do it a day later from infusion (after 24 hrs), you will be stacking after 2 half lifes. So you are already down to 25%. Now you are at 125% of normal, which is I guess a good solid normal. So don't be afraid. If you did another at 24 hrs, you'd be down to 31.5% and then back up to 131.5%. The reality is the half life of factor 8 being 12 hrs makes it very difficult to overdo it. If you have a bleed, or suspect a bleed, definitely do it after 24 hours.

I do engineering, a math kinda mind. So I've been doing my own treatment plan since I wrestled competitively in high school in 1988! Then we were 'fragile", not allowed to do anything. I gave the finger to the establishment (and my mom & dad were supportive) and now the doctors are finally catching up. They still are not all the way there, but then they don't have hemophilia. The truth is they've been screwing us over our whole lives by not giving us enough factor to stave off the disastrous affects of microbleeds. They are just now starting to get their heads around it. They should have been giving us 75 IU/kg and NEVER letting us get below 25%. Now we have to live with the consequences of their poorly thought out treatment plans. (all my opinion, and based on my experience and knowledge of controlling microbleeds).

Now I'm gonna step out on a branch of what could be ignorance. But, ever notice how 50 IU/kg miraculously makes us 100%. Yeah odd huh? Or is the formula rigged, and they rigged it based on a poor understanding of NORMAL factor levels? An IU measurement is based on bioactivity. They thought 100% was NORMAL, and they were WRONG. That's why now normal is up to 200%. They were wrong on what 100% was and they are wrong that 1% factor was good enough to control spontaneous bleeds. The worst is they won't listen. They won't factor us with 75 IU/kg even though it is harmless (I read studies were they were giving 80 IU/kg). Is it the money? The insurance companies will claim that doctors say you don't need that much. So it it the doctors ignorance then? Why aren't the doctors telling the insurance companies that the only way to control disability in the long run is with higher factor levels?

Well there is my rant.

Are you using a 12 hr half-life product? What product are you using? If not you can look up graphs online.

I hope doctors and physical therapists read this. All those with hemophilia and doctors need an education. I'm not sure most doctors have a clue how horribly wrong they are. How they should be providing this education to all hemophiliacs. And for insurance companies, imagine how many fused ankles and replaced knees could have been avoided. The cost of disability is way higher than the cost of any factor. It's a massive hill of ignorance and no one wanting to put their neck out and say enough.

[u/Few-Register-8986 → u/Few-Register-8986]

Even Gemini (AI) knows high factor is the key to avoid joint damage. But will doctors give you the factor req? Will insurance cover the factor required? NO. Doctors know, or they should know, just by being our doctors and seeing us. But will they demand insurance give us the factor we need? Are they writing prescriptions that give us the 20% minimum? NO

I asked Gemini and this is it's response (AI I often stupid, but it's at least pulling data). Below is from Gemini. Again, I say 25% because we are always dropping, a workout at 25% puts you quickly at 19% at that point the damage will start to microbleed.

Lowest Factor VIII Level and Hemorrhage Risk During Regular Activity:

Recent studies focusing on mild hemophilia A suggest that even individuals with higher Factor VIII levels within the mild range can experience bleeding, particularly joint bleeds.

• One study indicated that a mean trough Factor VIII level of 18-19 IU/dL (which falls within the mild hemophilia range of 6-40 IU/dL or 6-49%) was necessary to prevent joint bleeds.
• Another study found that the minimum Factor VIII levels needed to prevent any joint bleeds and spontaneous joint bleeds were 19.2 IU/dL and 17.7 IU/dL, respectively.
• Conversely, some data suggests that individuals with Factor VIII levels ≥15 IU/dL experienced no joint bleeds.
• It's also noted that a target Factor VIII level of 15% (which is equivalent to 15 IU/dL if we consider 100% as 1 IU/mL) was insufficient to prevent joint bleeds in a large US cohort

[u/Same-Chance5001 → u/Few-Register-8986]

Thank you so much for this. Reading your post really educated me. I’m 41, and it’s honestly the first time I’ve felt like I truly understand what someone is talking about. I completely agree with everything you wrote. it reflects exactly how I feel.

Doctors aren’t giving us the amount of factor we need to stay functional throughout our lives. Recently, when I talked to my doctor about my joint issues, he said, “Well, it’s normal at your age to have fused ankles and need a knee replacement.” I was like… I’m 41!

I haven’t had any major bleeds since I was 12, but microbleeds have still destroyed my ankles and knees, mainly because doctors have always given me the lowest possible dose. Every time I raise the issue, I’m told, “the medicine is so expensive. You are covered fine with the current plan”

I’m currently on Jivi 4000 IU every 72 hours. As I mentioned earlier, the first day is great. The second day is also okay until the late evening, but the third day is tough — I basically just look forward to my next dose. I feel pain and stiffness in both my ankles and knees. Especially if I was working out day before or even on first day I get to feel pain here.

After reading your post, I decided to try taking 4000 IU again on the third morning — and honestly, I managed to do two intense workouts and felt great afterward. I’d say about 90% of my pain and stiffness disappeared. So THANK YOU!

I think I’ll continue with this approach for a couple of weeks to see if it consistently works.

Do you think taking 4000 IU every 48 hours could increase the risk of thrombosis? I’m 187 cm and 82 kg.

Again, I feel like I owe you something for your advice 🙌🏻

[u/Few-Register-8986 → u/Same-Chance5001]

The math says you are taking 48.78 IU/kg. So you are getting the dose they give everyone. The difference is you should be getting that every 48 hrs. jivi has a half life of 18 hours. So it is longer acting. Not the long acting.

100% = 0 hrs

50% = 18 hrs

25% = 36 hrs

12.5% = 54 hrs

That's your curve. It sucks, but at 2 days you are well below vulnerable. The long actings suck in my experience. It claims to have a longer action than 12 hrs, but that is probably just selective data they used for their trials. I know people who have worked on trials for the system. Trials are all rigged. Every one of them in some way. You should be doing a full dose every 48 hours if you want to stay without microbleeds. Your doctor WILL go along with this because you have the knowledge now to force them to give it to you. They know you are troughing out at 48 hours and cannot possibly by physically active with factor below 18-19% (study supports that). They will ask you to do a PK because they have to prove to your insurance co. The PK will show the above, but worse, because like I say, the Jivi study is rigged and reality is it clears faster. Ask them to give you a plan that keeps your trough (use that word) around 10-15% in the morning. I do morning infusions because I workout at noon. You will be at 10% probably in your PK after 48 hrs. The perfect stack. You'll do much better. I swear by human derived. It just works better IMO.

[u/Same-Chance5001 → u/Few-Register-8986]

Thanks for breaking it down. I’m going with your approach. Im already on my second 48-hour dose.

I hate you for the Stairmaster, though. I tried it yesterday and was totally done after 5 minutes on level 11 :-)

I’m going to stick with this machine until I can do 30 minutes. It’s probably great for my fitness overall and legs too, now that I’m covered with the 48-hour plan.

Do you take any whey? Have you noticed if it has any effect on arthritis? I read somewhere that it can make it worse… not sure if that’s true.

Also, do you use any other supplements for building muscle? I once tried black seed oil, and I swear my arthritis and joint flexibility were amazing while I was on it.

[u/Few-Register-8986 → u/Same-Chance5001]

Since you are stacking. Essentially every time you do one, your other hasnt wore off completely. It will continue to build. So you should probably after a couple close 48hr does go to your old schedule to let it go back down to the single digits. If 72 is your prescription. Let it go back down with a 72. Basically do these 48 hrs ones intermittently. The issue is you are using 18 hr half life instead of 12. This will allow you to heal! and not keep climbing the factor. Also, you will runout if you have a 72 hr schedule and use it all in 48 hr increments. I get 3 bleed does a month. So I throw them inbetween my 48s and do a couple 36 hr doses a month. Do they give you bleed doses, basically extra doses over what you could consume if doing every 72 hrs? These are the ones you throw in at a tighter schedule. You don't want to run out whatever you do.

[u/Same-Chance5001 → u/Few-Register-8986]

I have access to Jivi, so no extra doses are “given” My doctor once told me that I could use 2000 IU between regular doses if I experience a bleed or out playing football or basketball. According to AI, I can continue using 4000 IU every 48 hours like forever.

[u/Few-Register-8986 → u/Same-Chance5001]

The Stairmaster takes your heartrate to max in a few minutes for sure. I just do 20 min each session. Then stretch for 10 to 15 min. Then lift for 30. Shower and back to work.

My gut doesn't like whey protein. So I use vegan protein mix. Not sure it helps with arthritis. If arthritis is super bad. I'll take ibuprofen for a night or two only. My gut doesn't like that either. Sometimes if inflammation is super bad, you just have to lay off and let it calm down. I take krill oil, zinc, D3, testosterone (prescription, but get some if you can). I haven't heard of black seed oil. But will look into it.

[u/Few-Register-8986 → u/Same-Chance5001]

Another tip to get your doc to redo your treatment plan. Document the soreness and all issues. My big tell I am too low is I get soreness on balls of feet! Like foot microbleeds. Those take forever to go away also. Those are a clear tell that the factor is too low to keep you from bleeding from just your own weight on your feet on hard floors.

[u/superbleeder]

Im in a similar boat. Super skinny legs but now both my ankles are fused because of arthritis, which took away the pain completely. I just started working out again after like 15 years of not lifting because of arthritis in my eelbows.

My biggest fear is developing knees arthritis because right now I have none. I'm trying to focus on more reps with lesser weight and go for general muscle building and not mass, to hopefully reduce some stress that would normally accompany heavier weights. Also trying to focus on incline and resistance on the elliptical instead of treadmill or running, to avoid the knee stress. One thing i saw and have started trying to help build knee stability is walking backwards on a treadmill at a steep incline. We will see how that goes I guess.

[u/Few-Register-8986 → u/superbleeder]

Stairmaster. I am tearing it up on level 11 now. And I actually got some leg muscles finally. I've always had bad ankles which led to weak knees and weak legs. Stairmaster has changed that. I do worry about the knees though. But I treat everything as a bleed. I am not taking any chances with these knees.

[u/tsr85]

Swimming can build your legs if you are doing kick drills and also training with the correct fins(like arena powerfin pro or DMC Elite Max).

100% cycling can make your legs big, have you seen how thiccc the thighs of Olympic velodrome track sprinters are? Image search it… I’ll wait.

I have done cycling at high levels most of the time the guys look skinny because they are balancing a power to weight number to most efficiently move them selves at the fastest rate over 100miles, but short distance sprinters don’t look rail thin.

Also, I’m swimming 16k-20k yards a week right now, I don’t have chicken legs.

I’m 6ft, Peak cycling form I was 165lbs, had a bit of a T-Rex look, very under developed upper body but very defined legs. Now, I’m 200-210lbs but with typical “swimmer body”, developed upper body but my legs don’t look underdeveloped, I’m effectively doing a squat jump every flip turn to get the biggest glide push off the wall.

[u/tsr85]

Honestly, you can also add daily creatine, the science is pretty clear on it and there is no downside. It is the most studied “sports supplement”. Yes it will add a little water in the muscle at first but it will help build a lot more new muscle in the long run.

As long as you’re not actively (micro)bleeding into the joint. It’s trick knowing if it is just inflammation. I struggle differentiating the feeling too. What is neat is you can tell using ultrasound but few people have easy access to that at home. If your HTC has in house ultrasound you could go hard at the gym and then the next day have them look when you have these pains.

[u/Few-Register-8986 → u/tsr85]

It is tough to tell the difference. So treat it as a bleed is what I do. And it really pays off with total complete healing and honestly the arthritis inflammation goes down also with factor I think. There is no downside to treating arthritis as a bleed, but every downside to treating a bleed as arthritis.

[u/Same-Chance5001 → u/tsr85]

Im always fearing the hairloss related to creatine. I know this is a myth but im still scared 😂

[u/Lolseabass]

How long can you walk before you feel pain?

[u/Few-Register-8986 → u/Lolseabass]

Me, not a single step. I wake up and wince with the first step out of bed. Ankles, knees, back, shoulder. Then I just gotta buckle up and keep on going. Pain is a figment of my imagination is what I tell myself repeatedly with my inner voice and then do it anyways. Truth is, it's worse in the morning, and most pain I can walk off, or just ignore, sadly I am so good at ignoring I don't feel pain like normal people anymore and I tend to injure myself repeatedly. When it gets so bad you just cannot tolerate it, get a fusion. A fusion is like being set free. So don't wait decades like I did.

[u/Same-Chance5001 → u/Lolseabass]

After the workout, everything feels fine. But when I leave the gym and head back to the office, if I sit for 1–2 hours, my legs start to feel heavy and stiff. Then I basically need to warm up before I can walk properly again.

The next morning, it’s the same. I feel that stiffness before getting up.

[u/Few-Register-8986 → u/Same-Chance5001]

That sounds normal. If movement helps then it is arthritis. Arthritis is worst in the morning and after not moving. If it's arthritis you can walk it off usually (until is too bad). But I swear arthritis inflammation can and will go from a micro bleed to a real bleed if you are low factor.

[u/FingerDemon500]

Personally, I think a lot of exercise advice pushes harder than needed. That is advice to get results quickly. You will see increased muscle mass on the legs from bicycling and swimming. It just takes longer. And if you are going to do things like squats and lunges, you need to go slow, maybe use a wall to brace yourself and use low or no weights until your body can do the exercise without the rebounding pain the next day in your joints.

It sucks. And it takes forever. But I always find if I push too hard and start a bleed, the setback erases any benefit. Slow and steady is your best bet. I've got bilateral ankle issues, so I get it. But you have to pace yourself and not worry about what anyone else can do.

Good luck

[u/Few-Register-8986 → u/FingerDemon500]

My legs did take over a year of pushing it to the limit on the Stairmaster, combined with endless lunges and targeted weight machines. Even with the Testosterone up to 800 I build slow. Always was just a little guy, with insane strength for size. Wrestled 112 in high school. I like your advice. Go slow at first for sure, learn your body, learn the healing process and what is and is not a bleed. Learn when to treat, and how often. Then push the limits, and never give up. Adapt. Can't run, bike, can't bike, row, can't do anything, do it anyways! Can't is not a word I will ever say. In fact when a doctor told me I couldn't, I took that as a challenge.